# ![@saving_liv Avatar](https://lunarcrush.com/gi/w:26/cr:tiktok::6921155860505543685.png) @saving_liv Saving Liv

Saving Liv posts on TikTok about saving, liv, genetics, tiktok the most. They currently have [-------] followers and [---] posts still getting attention that total [------] engagements in the last [--] hours.

### Engagements: [------] [#](/creator/tiktok::6921155860505543685/interactions)
![Engagements Line Chart](https://lunarcrush.com/gi/w:600/cr:tiktok::6921155860505543685/c:line/m:interactions.svg)

- [--] Week [-------] -32%
- [--] Month [---------] +0.45%
- [--] Months [---------] -69%
- [--] Year [----------] +460%

### Mentions: [--] [#](/creator/tiktok::6921155860505543685/posts_active)
![Mentions Line Chart](https://lunarcrush.com/gi/w:600/cr:tiktok::6921155860505543685/c:line/m:posts_active.svg)

- [--] Week [--] -8.80%
- [--] Month [--] +17%
- [--] Months [--] +32%
- [--] Year [---] +275%

### Followers: [-------] [#](/creator/tiktok::6921155860505543685/followers)
![Followers Line Chart](https://lunarcrush.com/gi/w:600/cr:tiktok::6921155860505543685/c:line/m:followers.svg)

- [--] Week [-------] +0.04%
- [--] Month [-------] +0.12%
- [--] Months [-------] +16%
- [--] Year [-------] +191%

### CreatorRank: [-------] [#](/creator/tiktok::6921155860505543685/influencer_rank)
![CreatorRank Line Chart](https://lunarcrush.com/gi/w:600/cr:tiktok::6921155860505543685/c:line/m:influencer_rank.svg)

### Social Influence

**Social category influence**
[finance](/list/finance)  [social networks](/list/social-networks)  [technology brands](/list/technology-brands)  [nfl](/list/nfl)  [countries](/list/countries) 

**Social topic influence**
[saving](/topic/saving) #158, [liv](/topic/liv) #239, [genetics](/topic/genetics), [tiktok](/topic/tiktok), [mid](/topic/mid) #299, [single](/topic/single), [if you](/topic/if-you), [approved](/topic/approved) #129, [form](/topic/form), [share](/topic/share)

**Top accounts mentioned or mentioned by**
[@hope](/creator/undefined) [@cure](/creator/undefined) [@whatuknoabout](/creator/undefined) [@michelle](/creator/undefined) [@ronikastone](/creator/undefined) [@jennifer](/creator/undefined) [@just](/creator/undefined) [@faar7](/creator/undefined) [@saving](/creator/undefined) [@haan](/creator/undefined) [@joana](/creator/undefined) [@people](/creator/undefined) [@12katespring34](/creator/undefined) [@bootsbabyboots](/creator/undefined) [@raven](/creator/undefined) [@carrie](/creator/undefined) [@logan](/creator/undefined) [@betty](/creator/undefined) [@kctigrl](/creator/undefined)
### Top Social Posts
Top posts by engagements in the last [--] hours

"Our road to diagnosis of mucopolysaccharidosis type [--] or Sanfilippo Syndrome for our daughter Liv #SavingLiv #childhoodalzheimers #sanfilipposyndrome Road to diagnosis 💜 SavingLiv.com Road to diagnosis 💜 SavingLiv.com"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7173427452214136107)  2022-12-04T22:42Z 57K followers, 370.8K engagements


"#sanfilipposyndrome #childhoodalzheimers #mucopolysaccharidosis #terminalgeneticdisorders #rare #rarebeauty #specialneeds #savingliv"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7274274483882446123)  2023-09-02T17:00Z 48.3K followers, 338.6K engagements


"Sanfilippo Syndrome is a neurodegenerative genetic disorder which causes regression in all life skills only after 2-3 years of life. Life expectancy is mid teens. There is currently no treatment. #sanfilipposyndrome #rarebeauty #mucopolysaccharidosis Come hang out with my daughter and I for [--] seconds. She has a terminal genetic disorder & we would love to find a cure in her lifetime 💜 Come hang out with my daughter and I for [--] seconds. She has a terminal genetic disorder & we would love to find a cure in her lifetime 💜"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7433054182862507307)  2024-11-03T14:06Z 47K followers, 12.2K engagements


"#sanfilipposyndrome #curesanfilipposyndrome #childhoodalzheimers #childhooddementia #savingliv #fyp #rare #specialneeds #MomsofTikTok Watch my daughter with Sanfilippo Syndrome smash some veggie straws (and pick her nose) while I tell you about her genetic disorder for [--] seconds. Watch my daughter with Sanfilippo Syndrome smash some veggie straws (and pick her nose) while I tell you about her genetic disorder for [--] seconds"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7440196709814177067)  2024-11-22T20:03Z 48.3K followers, 22.5K engagements


"Only blessing of this disease is the fact that she doesnt know she has it. Would you consider reposting to share her light 💜 #sanfilipposyndrome #mucopolysaccharidosis #genetics #rare #rarebeauty #savingLiv #terminal Liv has a terminal genetic disorder called Sanfilippo Syndrome. Shes [--] but cognitively shes [--] months old. Her life will be way too short and hard. Lets not sweat the small stuff and laugh like Liv 💜 Liv has a terminal genetic disorder called Sanfilippo Syndrome. Shes [--] but cognitively shes [--] months old. Her life will be way too short and hard. Lets not sweat the small stuff"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7447655539862998314)  2024-12-12T22:27Z 168.7K followers, 179.5K engagements


"Replying to @ 🎀"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7449451094536637739)  2024-12-17T18:35Z 48.5K followers, 153.2K engagements


"Liv has Sanfilippo Syndrome a fatal genetic disorder that causes progressive brain damage. She has lost the majority of her voice and will likely fully lose it in the next year. #sanfilipposyndrome #mucopolysaccharidosis #savingliv #genetics Watch childhood Alzheimers take away Livs singing voice 😞 Age [--] [--] Liv now has minimal words and rarely tries to sing. Sanfilippo Syndrome is a thief. We are praying for a cure 🙏 We miss this Liv all the time. And flashbacks become harder as she falls further behind. Watch childhood Alzheimers take away Livs singing voice 😞 Age [--] [--] Liv now has minimal"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7451413440096128298)  2024-12-23T01:29Z 48.5K followers, 91.4K engagements


"Livs Make-A-Wish to Disneyworld 💜 #sanfilipposyndrome #savingliv #genetics #mucopolysaccharidosis #makeawish #makeawishwisconsin #wishkid"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7454409209803754798)  2024-12-31T03:14Z 50.6K followers, [----] engagements


"Liv is minimally verbal and has Sanfilippo Syndrome a form of childhood dementia. #sanfilipposyndrome #toystory #childhooddementia #genetics #specialneedsmom #specialneeds A little play time before a nap. Liv LOVES Toy Story A typical meal And have lunch with us All done Liv LOVES chocolate milk A little play time before a nap. Liv LOVES Toy Story A typical meal And have lunch with us All done Liv LOVES chocolate milk"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7455799323423690030)  2025-01-03T21:09Z 50.6K followers, 90.5K engagements


"#sanfilipposyndrome #genetics #terminalillness #rare #savingliv #fyp #raredisease #rarediseaseawareness"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7456555734935915819)  2025-01-05T22:04Z 57K followers, 952.5K engagements


"Replying to @michelle #sanfilipposyndrome #genetics #terminalillness #rare"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7456855681354796331)  2025-01-06T17:28Z 50.6K followers, 22.3K engagements


"I do get very tearful so I apologize. This is my attempt at being an open book to every part of this diagnosis. Liv is the most amazing girl and the world will know her story. Please repost if you can 💜#sanfilipposyndrome #rarebeauty #rarediseaseawareness #diagnosisday #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7458314752654167338)  2025-01-10T15:50Z 57K followers, 228.4K engagements


"Please repost Spread these girls story #savetiktok #tiktok #fyp #tiktokbanned #sanfilipposyndrome #rarediagnosis #rare #rarebeauty #raredisease Liv Harper Lydia Liv Liv Harper Lydia Liv"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7458754909739945262)  2025-01-11T20:18Z 57K followers, 1.6M engagements


"#gopackgo #greenbay #jordanlove #playoffs #ronikastone #tiktok #fyp #packers #greenbaypackers Repost Share Lets get this to @RonikaStone and Jordan Love Repost Share Lets get this to @RonikaStone and Jordan Love"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7459099635584404778)  2025-01-12T18:36Z 57K followers, 10.6K engagements


"Testing to see if youre a carrier for a genetic disorder. #genetics #sanfilipposyndrome #mucopolysaccharidosis #savingliv #rarebeauty"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7459899036556922154)  2025-01-14T22:18Z 57K followers, 54.7K engagements


"Liv take the antidepressant (SSRI) Prozac(fluoxetine) off label for her genetic condition Mucopolysaccharidosis type [--] (Sanfilippo Syndrome). #sanfilipposyndrome #genetics #rare #raredisease #fyp #specialneedsmom"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7460187012197469482)  2025-01-15T16:55Z 57K followers, 35.1K engagements


"Cast your vote in the comment section We share Livs photos to raise awareness about Sanfilippo Syndrome which is a form of childhood dementia and is fatal. Livs photos have helped diagnose two girls with the same thing Who do you think she looks like #sanfilipposyndrome #genetics #rare #fyp #momsoftiktok"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7460563005617622315)  2025-01-16T17:14Z 57K followers, 46.5K engagements


"Sanfilippo Syndrome is a fatal genetic disorder and we have been sharing Livs story since her diagnosis in [----]. Liv has helped get two girls diagnosed earlier because of her photos and story. We continue to raise funds for the Cure Sanfilippo Foundation as we want her with us for WAY more than the next [--] years. Will you repost and help us find a cure 💜#sanfilipposyndrome #savetiktok #rare #fyp #genetics If TikTok was ending youd still share her story right Say her name and spread her light Wed find a cure together and Id get to keep her for life. If TikTok was ending youd still share her"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7460929249755811118)  2025-01-17T16:56Z 60.6K followers, 12.6K engagements


"Liv has MPS Type [--] which is a neurodegenerative genetic disorder. It causes significant regression in all skills and is fatal. Livs life expectancy is mid to late teens unless we find a cure in her short lifetime. Please repost her story 💜 #sanfilipposyndrome #specialneeds #speechtherapy #fyp #MomsofTikTok #specialneeds #specialneedsmomsoftiktok Though heartbreaking to me her saying you is confirmation that shes trying. Plus her smile tells me her answer too. This is her in [----] before the brain damage started. We need a cure 💔 PLEASE repost this 💜 Watch my [--] year old with Childhood"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7463202104950230318)  2025-01-23T19:56Z 149.3K followers, 489.5K engagements


"Clinical trial update. Liv has Mucopolysaccharidosis type 3B also known as Sanfilippo Syndrome. Its a form of childhood Alzheimers. Time is not on our side our little girl is getting bigger and we want her so badly to have a treatment option. #sanfilipposyndrome #childhoodalzheimers #lysosomalstoragedisorder #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7465407735878847790)  2025-01-29T18:35Z 162.8K followers, 102.9K engagements


"GRWL (Get Ready With Liv) 💜 #sanfilipposyndrome #specialneedsmom #specialneedsparenting #raredisease #rarebeauty #grwm #grwl"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7469832619396468011)  2025-02-10T16:46Z 135.2K followers, 110.9K engagements


"Replying to @Jennifer Liv has Sanfilippo Syndrome also known as MPS type [--] or childhood Alzheimers. Sharing the unique facial features and symptoms that come along with this genetic condition can help other families get an earlier diagnosis. Thank you as always for the love and support of our family 💜 #sanfilipposyndrome #fyp #genetics #childhoodalzheimers #medicaltiktok #pediatriciantiktok #specialneeds #autism #globaldevelopmentdelay #speechtherapy #speechdelay"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7497963937384729899)  2025-04-27T12:11Z 85.4K followers, 122.6K engagements


"Story time of our waiting game to find out if Liam had Sanfilippo Syndrome too like Liv. #sanfilipposyndrome #fyp #genetics #childhoodalzheimers #pregnant #pregnanttiktok #pregnancy"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7500680605114567982)  2025-05-04T19:52Z 121K followers, 4M engagements


"The gamble that comes with having kids 💜 #genetics #sanfilipposyndrome #fyp #specialneedsparenting 2:30 minute video discussing: [--]. Carrier status [--]. Sanfilippo Syndrome [--]. Carrier screens [--]. De novo mutations [--]. Gamble of having kids 2:30 minute video discussing: [--]. Carrier status [--]. Sanfilippo Syndrome [--]. Carrier screens [--]. De novo mutations [--]. Gamble of having kids"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7505876914561813806)  2025-05-18T19:56Z 149.3K followers, 109.3K engagements


"Im not giving up on Liv 💜 #sanfilipposyndrome #genetics #childhoodalzheimers #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7510195440273329451)  2025-05-30T11:15Z 112.4K followers, 106.7K engagements


"Stem cell transplant #sanfilipposyndrome #stemcelltransplant #genetics #childhoodalzheimers #fyp Current pic Age [--] Day before diagnosis Age [---] Current pic Age [--] Day before diagnosis Age 2.5"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7510671150704381226)  2025-05-31T18:00Z 168.7K followers, 1.9M engagements


"Replying to @Just me"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7511093663733222699)  2025-06-01T21:20Z 132.5K followers, 3.7M engagements


"Replying to @faaR7 Would we still have kids (naturally) if we knew ahead of time we were carriers #genetics #sanfilipposyndrome #fyp #carrierscreening"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7511868191438654766)  2025-06-03T23:25Z 135.2K followers, 122.6K engagements


"Liv has Mucopolysaccharidosis type [--] also known as Sanfilippo Syndrome. Is a neurodegenerative genetic disorder compared to Alzheimers but in kids. Our reality is that Liv will never be able to grow up to be a teacher or a doctor. She cant even tell us what she would want to be. These parts of school functions are so tough. I will continue to share the reality of special needs parenting even if it makes me cry. Thank you as always for the love and support for our family. #sanfilipposyndrome #fyp #4k #4kgraduation2025"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7514418411431071018)  2025-06-10T20:21Z 121.9K followers, 37.5K engagements


"Liv has Sanfilippo Syndrome. Its a neurodegenerative terminal genetic disorder with a life expectancy of mid to late teens. Livs cognitive function is about a [--] year old. These events can be tough but I will continue to make an effort to attend them and be there for Liv 💜 #inclusion #inclusionmatters #sanfilipposyndrome Inclusion video @ 0:26 seconds Inclusion video @ 0:26 seconds"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7515115289306991914)  2025-06-12T17:25Z 121.9K followers, 293.1K engagements


"Happy Fathers Day to Livs dad 💙 #FathersDay #specialneedsparenting #sanfilipposyndrome"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7516563532758977834)  2025-06-16T15:06Z 123.8K followers, 57K engagements


"Jumping on this trend of finding things to be grateful for. Livs terminal genetic disorder diagnosis can be soul crushing some days but I am attempting to find the small silver linings and things I can be grateful for. I hope to do this for [--] days What are you grateful for #sanfilipposyndrome #dayone #fyp #grateful #10daychallenge"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7518398971853720887)  2025-06-21T13:48Z 125.8K followers, 21.8K engagements


"Day [--] of finding something to be grateful for despite Livs fatal genetic disorder diagnosis. Liv has Sanfilippo Syndrome which is often referred to as Childhood Alzheimers. Liv is slowly losing her ability to talk walk and feed herself. Life expectancy is mid to late teens. Today (and every day) we are grateful for her school special needs program teachers and aides. #sanfilipposyndrome #publicschool #specialneedsmom #specialneedsparenting #specialneeds"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7519173560166812983)  2025-06-23T15:54Z 125.8K followers, 20K engagements


"The tent is from Adaptive Mall online its called Safe Place Bed. Thank you @Saving Veda for the recommendation #sanfilipposyndrome #sleepsafebed #sleepsafetent #specialneedmom #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7519919527728008462)  2025-06-25T16:08Z 163.7K followers, 116K engagements


"Liv had MPS Type [--] Sanfilippo Syndrome. Its like Alzheimers but in children. Liv is [--] but cognitively about a [--] year old. She is very orally fixated and you can find her pacifier in her mouth A LOT. And we are ok with that #sanfilipposyndrome #pacifier #fyp #specialneeds #specialneedsmom"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7520426716817378615)  2025-06-27T00:57Z 126.9K followers, 67.8K engagements


"Replying to @haan [--] questions answered [--]. Odds of not being a carrier at all. [--]. If Liams future partner isnt a carrier what are his childs odds [--]. Is this more common in girls [--] questions answered [--]. Odds of not being a carrier at all. [--]. If Liams future partner isnt a carrier what are his childs odds [--]. Is this more common in girls"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7522318136146677047)  2025-07-02T03:16Z 165.6K followers, 70.5K engagements


"Liv has childhood Alzheimers Mucopolysaccharidosis type [--] a terminal genetic disorder. Her life expectancy is 12-20. I love sharing Livs story. Do not hesitate to ask me a question about Liv or her genetic disorder. #sanfilipposyndrome #childhoodalzheimers #terminal #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7522864228156411191)  2025-07-03T14:36Z 132.5K followers, 180K engagements


"Realizing that a quality life doesnt look the same for everyone. To Liv her life is perfect. And she knows everyday how loved she is. And she shines brighter than a lot of able bodied people. #sanfilipposyndrome #childhoodalzheimers #terminal #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7523233571411217677)  2025-07-04T14:28Z 126.9K followers, 71.8K engagements


"Replying to @Joana explaining the differences in types of Sanfilippo Syndrome. #sanfilipposyndrome #childhoodalzheimers #fyp #genetics"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7524006517096385847)  2025-07-06T16:28Z 132.5K followers, 85.9K engagements


"Sanfilippo Syndrome is a terminal neurodegenerative genetic condition with a life expectancy of 12-20. These trips are important and my parents are AMAZING people. I am so thankful for them 💙#sanfilipposyndrome #childhoodalzheimers #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7524870842593955086)  2025-07-09T00:22Z 132.5K followers, 110.4K engagements


"Sanfilippo Syndrome explained - back to focusing on education Thanks for your patience with me while I navigated the elopement vacation and response 💜 #sanfilipposyndrome #childhoodalzheimers #terminalgeneticdisorders Age [---] Month of diagnosis Age [--] Age [---] Month of diagnosis Age 5"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7525130820332342583)  2025-07-09T17:11Z 134.2K followers, 50.5K engagements


"People Magazine Thank you to @People Magazine for sharing Livs story. More and more people are able to recognize the signs and symptoms of Sanfilippo Syndrome thanks to the community of people who have rallied behind helping us get her story out there. #sanfilipposyndrome #childhoodalzheimers #peoplemagazine"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7525525468242595127)  2025-07-10T18:42Z 134.2K followers, 34.9K engagements


"Merging TikTok trends putting myself out there for the sake of awareness and attempting to be creative. Sanfilippo Syndrome is a neurodegenerative genetic disorder often referred to as childhood Alzheimers. There is no cure and life expectancy is mid to late teens. Tell me in the comments what your favorite sweet treat is #sanfilipposyndrome #childhoodalzheimers #terminal #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7527030183799344398)  2025-07-14T20:02Z 134.2K followers, 33.8K engagements


"I had to jump on this trend. #sanfilipposyndrome #genetics #vaccines #fyp #ihaveonedaughter This is genetic from conception from my husband and I. Its not a vaccine injury. What vaccines have you gotten Her name is Liv she is [--] beautiful but has a fatal genetic disorder You arent listening. Tell me about your daughter Your pediatrician did you a disservice by vaccinating her. She needs a heavy metal detox . Did you vaccinate her Insert scientific literature and evidence about how vaccines do not cause this type of change to DNA. Its an error in translation during conception generations before"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7527487454073408823)  2025-07-16T01:36Z 166.4K followers, 40.8K engagements


"Please share and donate if you can. I KNOW we can do this but I need your help. #fyp #sanfilipposyndrome #pleasegoviral #pleasehelp Link in bio 💜 SavingLiv.com Link in bio 💜 SavingLiv.com"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7527742666419801357)  2025-07-16T18:06Z 135.9K followers, 63.8K engagements


"Leaving my perfect full time job to be with Liv came with a lot of thought and tears. Liv has Sanfilippo Syndrome its a neurodegenerative terminal genetic disorder with a life expectancy of mid to late teens. There is currently no cure or effective treatment options. Sharing her story and my experience has been a great outlet for me and I absolutely appreciate all the love and support. #sanfilipposyndrome #childhoodalzheimers #fyp #genetics #specialneedsparenting"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7529570624025464119)  2025-07-21T16:20Z 140.6K followers, 108.4K engagements


"I am debating sending this (or something like this) to school for Livs classmates this fall. Is this too much If anything it may give teachers guidance on answering questions about Liv they may get from students. I could also make a video for just teachers that explains things on a deeper level. Let me know what you think #sanfilipposyndrome #childhoodalzheimers #fyp #backtoschool A video message for Livs new classmates A video message for Livs new classmates"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7530363079570361655)  2025-07-23T19:35Z 135.9K followers, 268K engagements


"Sanfilippo Syndrome is a form of childhood Alzheimers. Its a rare neurodegenerative genetic disorder that currently has no FDA approved treatment. There have been no clinical trials for Livs Type (B) but there has been for type A. Early diagnosis is key to better more appropriate care for our kids. #sanfilipposyndrome #childhoodalzheimers #fyp #genetics #specialneeds"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7531111145650900237)  2025-07-25T19:58Z 135.9K followers, 61.1K engagements


"Replying to @12katespring34 Communicating with Liv & her AAC talker device #sanfilipposyndrome #childhoodalzheimers #aacdevice #speechtherapy"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7532956596964461837)  2025-07-30T19:19Z 167.8K followers, 56.2K engagements


"I vow to remain transparent and realistic about Livs journey. This doesnt mean that Im giving up by any means If a treatment option becomes available that will help Liv have a better quality of life we will definitely consider it. We still remain hopeful that a treatment option will be available at some point that will help kids with this disease live better lives. #sanfilipposyndrome #savingliv #childhoodalzheimers #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7534787155424464141)  2025-08-04T17:42Z 149.3K followers, 71.1K engagements


"The national MPS society hosts an annual conference that discusses all seven types (Sanfilippo is type 3). Presentations in research and updates from drug companies were so informative. This year it was in Denver and we have family there so we couldnt pass up that opportunity to see family and learn about the future treatment options #sanfilipposyndrome #mpsconference #mucopolysaccharidosis Liv says hi quickly at 00:13 Sadie & Liv photo at the end 💜 Livs Sanfilippo Sister Sadie 💜 Liv says hi quickly at 00:13 Sadie & Liv photo at the end 💜 Livs Sanfilippo Sister Sadie 💜"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7537138358934441230)  2025-08-11T01:46Z [--] followers, 25K engagements


"Carrier screens do NOT look at all your genes they only catch 200-400 out of thousands. So genetic mutations are still missed and genetic mutations can be de novo (spontaneous) so its not a catch all. BUT its a catch some and in hindsight I would have done that if I was aware. There are countries and religions that recommend or even require carrier screens to get married. Knowledge is power. #sanfilipposyndrome #carrierscreening #fyp #childhoodalzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7539559049214332215)  2025-08-17T14:20Z 160.4K followers, 53K engagements


"Tis the flu shot season 💉 #sanfilipposyndrome"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7559624030966402318)  2025-10-10T16:03Z 168.7K followers, 26.7K engagements


"Why we are ok with our [--] year old using a pacifier. #sanfilipposyndrome #mucopolysaccharidosis #genetics #rare #pacifier #rarebeauty #savingLiv #curesanfilipposyndrome"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7450677064505560366)  2024-12-21T01:52Z [--] followers, 82.1K engagements


"Livs eyebrow evolution. I will add that dark eyebrows are just one small symptom amongst all the additional symptoms that come with Sanfilippo. If your baby has big eyebrows it can be TOTALLY normal We continue to share her photos to help bring awareness to the signs and symptoms of her genetic disorder. Had we known about them earlier we may have been able to get an earlier diagnosis. Livs photos and story have helped diagnose @Hope for Lydia Mama💜 and @C Jay Harper with Sanfilippo thank to TikToks reach. Please continue to ask questions in the comments. #genetics #sanfilipposyndrome #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7461832877626527022)  2025-01-20T03:23Z 182.8K followers, 1M engagements


"Liv has Mucopolysaccharidosis type [--] a fatal lysosomal storage disorder. We would love for you to repost this to help share her story 💜 #sanfilipposyndrome #childhoodalzheimers #childhooddementia #mucopolysaccharidosis #specialneeds"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7462755194632146218)  2025-01-22T15:02Z 179.9K followers, 3.2M engagements


"Biology 101: and how it relates to my daughters terminal genetic disorder. #sanfilipposyndrome #biology #lysosomalstoragedisorder #lysosome #nerdy #nerd #fyp #savingliv #mucopolysaccharidosis"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7464709677759188266)  2025-01-27T21:26Z 181.6K followers, 18K engagements


"Livs enlarged stomach is due to her genetic condition which causes a large liver wider ribs low abdominal muscle tone and more inflammation all over. Eliminating gluten and dairy didnt make much of a difference and since Liv is so picky we now just let her eat what she wants to (within reason 😂). As always we appreciate all the love and support youve shown our family. Please continue to repost her story 💜 #sanfilipposyndrome"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7470991122995727658)  2025-02-13T19:41Z 170.1K followers, 1M engagements


"Liv was diagnosed with MPS type [--] also known as Sanfilippo Syndrome three years ago. And when I watch old videos of her I see how obvious it was that something was going on. If I was blind to it I know other parents may be as well. I share her story so others can learn and hopefully benefit from the knowledge this brings. May 15th is MPS awareness day. Please share Livs story with a friend 💜 #sanfilipposyndrome #fyp #genetics #childhoodalzheimers #pediatriciantiktok ##medicaltiktok #pediatriciantiktok #specialneedsmom"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7499833015015640363)  2025-05-02T13:03Z [--] followers, 469.5K engagements


"I hope that sharing my anticipatory grief journey can help others. Whether they can relate or feel comfortable sharing theirs. Liv is now [--] and has had considerable regression. We need a cure yesterday. #sanfilipposyndrome #genetics #childhoodalzheimers #grief #anticipatorygrief"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7507317571281014058)  2025-05-22T17:06Z 171.5K followers, 4.1M engagements


"The reality of Sanfilippo Syndrome right now is that it will take Livs life regardless of a trial. And pursuing a trial is controversial at this point in my opinion. We needed a therapy option the moment she was born before the waste product had a chance to accumulate in her body. We will continue to fight for treatment options as parents need options the second they receive this diagnosis for their child. No parent should have to fight like this. #sanfilipposyndrome #genetics #childhoodalzheimers #grief #fyp Age: almost [--] before diagnosis Age: almost [--] before diagnosis"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7509890188101815598)  2025-05-29T15:29Z 182.8K followers, 4.4M engagements


"Replying to @Bootsbabyboots My opinion on getting genetic screening before having kids. #fyp #genetics #sanfilipposyndrome"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7511412280110697771)  2025-06-02T17:56Z 182.8K followers, 1.6M engagements


"Sanfilippo Syndrome is Mucopolysaccharidosis type [--] a terminal genetic disorder. Life expectancy is 12-20 with no current FDA approved treatments. This is not on the NIPT or newborn screen so its not caught typically until symptoms start adding up. I share her story and her photos to raise awareness so other families can get earlier diagnosis. I pray one day this is on the newborn screen and there are treatment options available. #sanfilipposyndrome #fyp #genetics #childhoodalzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7516657276036336939)  2025-06-16T21:09Z 182.8K followers, 158.1K engagements


"@Hope for Lydia Mama💜 Childhood Alzheimers Sanfilippo Syndrome is a rapidly progressing neurodegenerative genetic disorder. Its caused by a faulty enzyme which leads to a build up of toxic cellular waste which accumulates as these kids grow. We will continue to fight for all kids and families affected by this awful disease. Liv Lydia Liv Lydia"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7517378672127380749)  2025-06-18T19:49Z 179.7K followers, 466.7K engagements


"Livs terminal genetic disorder diagnosis was the beginning of many pivots for me and our family. I know Im not the only one who struggles with lifes pivots. As always I appreciate the support for our family. #sanfilipposyndrome #childhoodalzheimers #pivot #specialneedsmom PIVOT PIVOT"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7517757356952849678)  2025-06-19T20:18Z 182.8K followers, 39.3K engagements


"Elopement the friend weve heard about but have yet to really see rear his ugly head until this weekend. #sanfilipposyndrome #childhoodalzheimers #fyp #genetics #elopement"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7524450910701931789)  2025-07-07T21:13Z 182K followers, 4.1M engagements


"Liv has MPS Type 3B also known as Sanfilippo Syndrome. Its a neurodegenerative fatal genetic disorder. I share these vulnerable moments as I know if Im feeling this or thinking this way so are others. This is a safe space of positivity and encouragement. Thank you 💜 #sanfilipposyndrome #childhoodalzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7528792197378968846)  2025-07-19T13:59Z 172.5K followers, 275.1K engagements


"Liv has Sanfilippo Syndrome a neurodegenerative fatal genetic disorder. Its a form of childhood Alzheimers. While no trial has been available to Liv since her diagnosis three years ago I am proud of the impact shes making on this earth and I know we will see a treatment option in her lifetime. #sanfilipposyndrome #childhoodalzheimers #genetics #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7533358750879550733)  2025-07-31T21:19Z 173.2K followers, 208.2K engagements


"PBA pseudobulbar affect is something we were familiar with as we have seen several of our Sanfilippo families share similar stories. Whether this is PBA or just another symptom of Sanfilippo its just a heartbreaking reminder of how hard this disease is on her and our family. Her three year old brother has no idea why we cant make her feel better 😞 #psuedobulabaraffect #sanfilipposyndrome"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7556628950319975693)  2025-10-02T14:20Z 170.6K followers, 1.3M engagements


"Liv has MPS type 3B Sanfilippo Syndrome. It is a neurodegenerative terminal genetic disorder. There is currently no approved treatment option and every day it continues to wreck havoc on her body and brain. Id give anything to live the life we had before we knew you were dying. #sanfilipposyndrome #fyp Some days Id give anything to go back to the good old days before I knew childhood Alzheimers was going to take you from me. Some days Id give anything to go back to the good old days before I knew childhood Alzheimers was going to take you from me"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7557705624193207565)  2025-10-05T11:59Z 171.6K followers, 102.5K engagements


"Liv has a neurodegenerative genetic disorder similar to Alzheimers but in children. In navigating this rare disease parenting journey I am so acutely aware of all the help I get. Days are still tough but they could be a whole lot tougher. If youre a part of someones support system thank you. #sanfilipposyndrome #fyp #specialneedsparent #medicalmom #lucky"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7558860668431043895)  2025-10-08T14:40Z 172.6K followers, 115.6K engagements


"Liv has Mucopolysaccharidosis type [--] also known as Sanfilippo Syndrome. Its a neurodegenerative terminal genetic disorder cause by a missing enzyme. Liv is [--] and still eats by mouth fairly well for us though she is picky. We are grateful she loves milk #sanfilipposyndrome #fyp #feedingtubeawareness #specialneedsmom"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7559249679326743821)  2025-10-09T15:49Z 170.2K followers, 69K engagements


"My daughter Liv has Sanfilippo Syndrome a neurodegenerative fatal genetic disorder with a life expectancy of 12-20. She was diagnosed in [----] when she was [--]. She is currently [--]. Im working my way through all the emotions that come with this life altering diagnosis. If youve had a similar traumatic event my heart goes out to you. #sanfilipposyndrome #fyp #lossofassumptiveworld #loss #trauma"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7561831752050691341)  2025-10-16T14:49Z 171.5K followers, 32.7K engagements


"Replying to @RAVEN Why does Sanfilippo Syndrome have a low life expectancy #sanfilipposyndrome #fyp #genetics"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7562157213922430221)  2025-10-17T11:52Z 170K followers, 222.3K engagements


"Sanfilippo Syndrome is a neurodegenerative terminal genetic disorder with no current FDA approved treatments. Supportive measures only. While I wish there was a section on actual treatment options that prevent progression I am thankful we actually had guidelines to help support our kids 💜 #sanfilipposyndrome #fyp #curesanfilippo #savingliv #guidelines"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7563340626431855886)  2025-10-20T16:25Z 170.6K followers, 23.8K engagements


"An opportunity at a drug therapy for Sanfilippo Type B but at a high cost. Something a family should never have to even consider. If youre inclined to give please consider a donation to the Cure Sanfilippo Foundation in Livs honor. #sanfilipposyndrome #enzymereplacement #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7565983627763322126)  2025-10-27T19:21Z 173K followers, 90.7K engagements


"Please consider a donation if you have it in your hearts. @Hope for Lydia Mama💜 & @Cure Poppy + Oliver 💜 are two amazing Sanfilippo Type B families that could truly be impacted by this opportunity. #sanfilipposyndrome Lydia Type B Lydia Type B"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7566420391917407543)  2025-10-28T23:36Z 172.5K followers, 27.7K engagements


"Please consider a donation to the Cure Sanfilippo Foundation via our GoFundMe. If you cannot donate please like share and repost. Long comments help reach larger audiences too All my love and appreciation always. Thank you 💜 #fyp #sanfilipposyndrome #pleasegoviral #pleasehelp @Hope for Lydia Mama💜 @Cure Poppy + Oliver 💜 @Carrie + Haidyn 🦋 @Logan and Fam 💜"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7567102764069801229)  2025-10-30T19:43Z 182.8K followers, 366.9K engagements


"Update: we are at $1.15 million with a $250000 match that has not yet factored into that And I was able to talk to Livs mom about all the positive benefits her daughter had while on this therapy. #sanfilipposyndrome #fyp #geneticdisorder #fundraiser #savingliv Liv who was in this clinical trial My Liv Liv who was in this clinical trial My Liv"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7569223674239274295)  2025-11-05T12:53Z 182.8K followers, 75.3K engagements


"A day in the life of a special needs SAHM when my kids are in school 💜 #blessed #savingliv #sanfilipposyndrome #fyp #DITL"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7572226188173790477)  2025-11-13T15:05Z 180.2K followers, 59.8K engagements


"My therapist also talked about rephrasing decisions to intentions. To give ourselves grace for the blame we put on ourselves when things dont have the best outcome. At the end of the day I have the best intentions for Liv. #sanfilipposyndrome #fyp #savingliv #sanfilipposyndromeawareness"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7575261517503843597)  2025-11-21T19:24Z 181.4K followers, 115.1K engagements


"Black Lv trainers 🖤#mensfashion #fashiontiktok #luxuryshoes #styleinspo #christmasgifts"  
[TikTok Link](https://www.tiktok.com/@lenca537/video/7578572094305275150)  2025-11-30T17:30Z 45.6K followers, 209.6K engagements


"Fundraiser update I will be stepping back from fundraising for awhile focusing my videos on education and awareness for the next bit. Along with enjoying the holidays with my family. All the love and appreciation always Erin 💜#sanfilipposyndrome #fyp #savingliv #hopeforlydia"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7579024627704368398)  2025-12-01T22:46Z 182.8K followers, 63.9K engagements


"In all my emotions tonight putting this out here might delete later 🥺 Move along if you dont like watching me cry. Sanfilippo syndrome causes childhood Alzheimers with loss of speech ability to walk and feed themselves. There is no current FDA approved treatment. #savingliv #sanfilipposyndrome #anticipatorygrief #lossofassumptiveworld"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7579459900724546829)  2025-12-03T02:55Z 182.8K followers, 233.9K engagements


"When all the negativity starts building up I find myself thankful for small victories or silver linings within this diagnosis. Sometimes I feel ashamed that Im even grateful for some of these things but without those moments of gratefulness I drown in sorrow. To all our followers that are going through tough times I see you. #savingliv #sanfilipposyndrome #fyp #silverlining"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7583008341236976910)  2025-12-12T16:25Z 182.8K followers, 39.4K engagements


"Liv has Sanfilippo Syndrome also known as as Mucopolysaccharidosis (MPS) Type [--]. She peaked verbally around age 2-3 and has regressed to almost non-verbal. But she has so much light and heart inside that smile ❤ #savingliv #sanfilipposyndrome #fyp #genetics #santa Liv has a form of childhood Alzheimers. She used to be able to say Santa 🥺 You can tell shes thinking about it and trying. Santa photos at the end ❤ Ready to see him shes very hyper and typically watches TV while jumping Liv has a form of childhood Alzheimers. She used to be able to say Santa 🥺 You can tell shes thinking about it"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7584112930313047310)  2025-12-15T15:52Z 182.8K followers, 89.3K engagements


"Liv has a form of childhood Alzheimers called Sanfilippo Syndrome. It causes neuro and physical regression starting in toddler years leading to total loss of skills and a life expectancy of 12-20. We will continue to share Livs story so people can recognize the signs and symptoms of this. #sanfilipposyndrome #fyp #savingliv #genetics #autism"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7598602792327974157)  2026-01-23T17:00Z 183K followers, 103.2K engagements


"Liv has a form of childhood Alzheimers called mucopolysaccharidosis type 3B also known as Sanfilippo Syndrome. A coping mechanism I have when overwhelmed with grief is to acknowledge small silver linings to her diagnosis 💜 #sanfilipposyndrome #fyp #light #dementia #alzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7600103660080745759)  2026-01-27T18:04Z 183K followers, 61.9K engagements


"February Update 💜 #sanfilipposyndrome #fyp #savingliv #childhooddementia #childhoodalzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7603134341782195469)  2026-02-04T22:04Z 183K followers, 31.9K engagements


"Sanfilippo Syndrome is a neuro degenerative terminal genetic disorder caused by a single missing enzyme. Both parents have to be carriers and their children each have a 25% chance of getting it. Its currently not on the newborn screen and there is no FDA approved treatment available at this time. Life expectancy is mid to late teens. #sanfilipposyndrome #fyp #genetherapy #childhoodalzheimers #genetics"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7603778395931020558)  2026-02-06T15:44Z 183K followers, 162.1K engagements


"Replying to @Betty Please comment if you have kids did you and your partner do your full genome screen before trying for children #pregnancy #geneticscreening #carrierscreening #genetics #fyp #momsoftiktok #momlife"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7456968095492590890)  2025-01-07T00:44Z 182.9K followers, 72.6K engagements


"Liv has MPS Type [--] B also known as Sanfilippo Syndrome. Its a neurodegenerative terminal genetic disorder with no cure or treatment options available. I will continue to share her story until this is on the newborn screen and a treatment option is available for our kids. #sanfilipposyndrome #childhoodalzheimers #fyp #genetics"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7529281144534158606)  2025-07-20T21:36Z 183K followers, 91.6K engagements


"I dont mind curious questions Thats why Im here 💜 Liv has Sanfilippo Syndrome Type B its a neurodegenerative terminal genetic disorder. She was diagnosed at the age of two and we have been fundraising since then but there have been no clinical trials for her type in the US since her diagnosis. We continue to fight for research education and awareness. Thank you all 💜💜#sanfilipposyndrome #childhoodalzheimers #genetics #fyp #specialneeds"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7532860273900670263)  2025-07-30T13:06Z 183K followers, 87.1K engagements


"Sanfilippo Syndrome is Mucopolysaccharidosis type [--] its a lysosomal storage disorder. There are four types because there are four genes that code for four different enzymes that all break down the same cellular waste. Its why all kids with SF have the same symptoms but at different levels its also why the treatment options are not interchangeable. #fyp #sanfilipposyndrome #sanfilippo"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7557524130443119927)  2025-10-05T00:13Z [--] followers, 1.5M engagements


"I wish all our updates were this positive 💜 #sanfilipposyndrome #sprucebio #enzymereplacementtherapy #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7558209190095817997)  2025-10-06T20:32Z 182.9K followers, 102.6K engagements


"Replying to @kctigrl 🤘🫐 This enzyme replacement medication is still a possibility for Liv 💜"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7572971807033036087)  2025-11-15T15:19Z [--] followers, 154.1K engagements


"We are at $3.46 million with only $340000 to go by December 1st. THANK YOU @Hope for Lydia Mama💜 #sanfilipposyndrome #fyp #hopeforlydia #savingliv #givingtuesday"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7577891893216841015)  2025-11-28T21:31Z [--] followers, 96.4K engagements


"Sanfilippo Syndrome is a degenerative terminal genetic disorder often referred to as childhood Alzheimers. Life expectancy is mid to late teens with no current FDA approved treatment clinical trials/experimental therapies only. #sanfilipposyndrome #fyp #savingliv #genetics"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7578629053935045902)  2025-11-30T21:11Z [--] followers, 180.8K engagements


"Thank you for all the love and support for our family this year and the past three years since Livs diagnosis. I appreciate you all more than you know and hope you have a Merry Christmas ❤ #fyp #savingliv #sanfilipposyndrome #christmas #christmaswish"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7585603172576578830)  2025-12-19T16:14Z 183K followers, 35K engagements


"Liv has Sanfilippo Syndrome a form of Childhood Alzheimers. Its a neurodegenerative fatal genetic disorder all due to just one wrong gene 😞 We pray that CRISPR gene therapy or enzyme replacement advancements continue and our girl can have a fighting chance at life. Can you help by sharing her story #sanfilipposyndrome #genetics #childhoodalzheimers This is all due to just one wrong gene 😞 Liv has Sanfilippo Syndrome a neurodegenerative fatal genetic disorder. Watch Childhood Alzheimers take away Livs words 😞 Age [--] [--] These are family members names. She can now only say [--] of [--]. We wont stop"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7507016783870725422)  2025-05-21T21:39Z [--] followers, 1.1M engagements


"Also I was pregnant with Liam during that whole work up 😩 #sanfilipposyndrome #childhoodalzheimers #genetics #fyp Current photo At the time of diagnosis Current photo At the time of diagnosis"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7533705548475141431)  2025-08-01T19:45Z 183K followers, 1M engagements


"Liv has a form of childhood Alzheimers. Its a neurodegenerative fatal genetic caused by a missing enzyme in all her cells. While kids are born appearing healthy this disease steals everything from them. Life is hard for these kids and their families. We have shift from hoping for a cure that will save her life to understanding how precious quality time is. We vow to give her the best of us and this life. #sanfilipposyndrome #childhoodalzheimers #fyp #savingliv #specialneeds"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7539174811289816333)  2025-08-16T13:29Z [--] followers, 708.2K engagements


"My intent is never to cry but I cry super easily so Im sorry. Please dont hesitate to reach out. I had [--] Sanfilippo moms who were there for me right away and I want to be that person for others. #sanfilipposyndrome #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7555572997235510542)  2025-09-29T18:02Z 183K followers, 105.9K engagements


"Sanfilippo Syndrome aka Mucopolysaccharidosis type [--] is an inherited autosomal recessive neurodegenerative terminal genetic disorder. It resembles Alzheimers but in children. #savingliv #fyp #sanfilipposyndrome #sanfilippo #genetics"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7571543457202752782)  2025-11-11T18:56Z [--] followers, 1.4M engagements


"@Hope for Lydia Mama💜 Can you send her $16 to help save her daughter Just liking sharing following her reposting this video and her videos goes a long way #hopeforlydia #savingliv #sanfilipposyndrome #fyp Lydia Liv Lydia Liv"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7572775517846375694)  2025-11-15T02:37Z [--] followers, 2.1M engagements


"Grief is sneaky but I try to look at it like its a testament to how much love I still have to give her. Thank you to Andrew Garfield for that thought ❤ #sanfilipposyndrome #savingliv #fyp #grief #anticipatorygrief"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7595009066376662327)  2026-01-14T00:34Z 183K followers, 50.2K engagements


"You are my sunshine ☀💜 #raredisease #sanfilipposyndrome #terminalillness"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7201717799255821610)  2023-02-19T04:23Z 183K followers, 2.3M engagements


"I didnt expect her words to fade so quickly. We expect full loss of words by age [--] and a life expectancy of mid teens. We need a cure before its too late for Liv. #sanfilipposyndrome #childhoodalzheimers #mucopolysaccharidosis #rarebeauty #specialneedsmom #fyp #momsoftiktok #savingliv Watchingmy4yearolddaughterbecomelessverbalduetochildhoodAlzheimers😥 Watchingmy4yearolddaughterbecomelessverbalduetochildhoodAlzheimers😥"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7301897213486173483)  2023-11-16T03:30Z [--] followers, 11.5M engagements


"Facial features of Sanfilippo Syndrome typically include dark eyebrows that get stronger with age coarse hair downturned eyes low nasal bridge large head button nose and widely spaced teeth. Its not just physical appearance either its speech delay clumsiness ear and sinus infections GI issues and more. Please consider liking commenting or reposting our story to help reach a larger audience 💜 #sanfilipposyndrome #fyp #genetics #childhoodalzheimers #medicaltiktok #pediatriciantiktok #medicalstudent Age [--] Age [---] Month of diagnosis (Facial features described in caption) Age [--] Age [--] Age 2.5"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7497343065162583342)  2025-04-25T20:00Z [--] followers, 7.6M engagements


"Loving Liv is easy. We cannot always understand what she wants but we know she is happy and loved. Sanfilippo Syndrome is a neurodegenerative fatal genetic disorder that causes regression in all skills including talking walking and eating by mouth. Life expectancy is mid to late teens with no current approved treatment. Sharing her light as she is an angel here on earth. #sanfilipposyndrome #childhoodalzheimers #fyp #genetics"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7531933907185356087)  2025-07-28T01:10Z [--] followers, 2.6M engagements


"I am extremely grateful to have a respite provider like Klarissa. She was an angel sent to our family and she keeps me sane 😂 #fyp #savingliv #respite #respitecare #sanfilipposyndrome"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7584926783510695223)  2025-12-17T20:29Z [--] followers, 39.8K engagements


"Sanfilippo Syndrome is a degenerative lysosomal storage disorder caused by a single missing enzyme. It causes physical and cognitive damage and shortens life expectancy to mid to late teens. There is currently no cure. #sanfilipposyndrome #fyp #genetics #savingliv #lysosomalstoragedisorder"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7586362994846616846)  2025-12-21T17:23Z 183K followers, 372.4K engagements


"Merry Christmas First take 🙌🏻🤗😘 Childhood Alzheimers deserves to be shared and to take up space in this world. We will continue to fight for Liv and all the children affected 💜"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7587539737678712078)  2025-12-24T21:29Z 183K followers, 138.1K engagements


"Replying to @whatuknoabout. why we didnt pursue IVF #sanfilipposyndrome #salpingectomy #ivf #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7588164675649539341)  2025-12-26T13:55Z 183K followers, 71.1K engagements


"Sanfilippo Syndrome is a degenerative terminal genetic disorder with a life expectancy of 12-20. It is caused by a single missing enzyme that breaks down a cellular waste product called heparan sulfate. So that accumulates and causes damage to all the cells in Livs body. #sanfilipposyndrome #fyp #cold #virus #sickness"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7589458846591044878)  2025-12-30T01:37Z 183K followers, 66.6K engagements


"Feeling very hopeful leading into [----] 💜 As always thank you for the love and support for Liv and our family. #sanfilipposyndrome #savingliv #fyp #2026 #lysosomalstoragedisorder"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7593407991399943479)  2026-01-09T17:02Z 183K followers, 40.5K engagements


"I wonder if theyll repost this video Theyve created over [--] copycat Facebook pages. Almost immediately after the last one gets taken down 🙄#sanfilipposyndrome #savingliv #fyp #hacker #facebook"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7593863562058026253)  2026-01-10T22:29Z 183K followers, 24.2K engagements


"Saving Liv Store is open Tumblers travel mugs coffee mugs wine tumblers tanks tshirts sweatshirts youth and toddler tees #sanfilipposyndrome #savingliv #fyp #fundraiser"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7595627436226776375)  2026-01-15T16:34Z 183K followers, 21.2K engagements


"My daughter is an angel here on Earth and my son is a miracle I didnt know I would need. Im rich because theyre in my arms and love me back 🥹 #sanfilipposyndrome #fyp #iris #savingliv #childhooddementia When TikTok picks the music and its spot on 🥹 When TikTok picks the music and its spot on 🥹"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7600591333262134559)  2026-01-29T01:36Z 183K followers, 23.6K engagements


"This one is about me Hopeful to use my platform to share my story and encourage others to be screened. #breastcancer #mammogram #cancerawareness #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7597107577264033037)  2026-01-19T16:17Z 183K followers, 82.6K engagements


"Glass child is a way to describe the sibling of a child with complex needs. They often feel overshadowed and unseen. While I focus a lot of this page on Liv rightfully behind the scenes I make every effort to make Liam feel just as loved. #sanfilipposyndrome #supersibling #glasschild #savingliv #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7603400379459472654)  2026-02-05T15:16Z [--] followers, 433.3K engagements


"Liv has a terminal genetic disorder called Sanfilippo Syndrome. Its an extremely challenging disease with behavioral issues seizures and loss of all abilities. Complete regression. Its not an easy road but a road that teaches so much. Sometimes I just need to be reminded to be present. #sanfilipposyndrome #fyp #genetics #savingliv #childhoodalzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7604520224645319950)  2026-02-08T15:43Z 183K followers, 114K engagements


"My intent is never to cry but I cry super easily so Im sorry. Please dont hesitate to reach out. I had [--] Sanfilippo moms who were there for me right away and I want to be that person for others. #sanfilipposyndrome #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7555572997235510542)  2025-09-29T18:02Z 183K followers, 105.9K engagements


"You are my sunshine ☀💜 #raredisease #sanfilipposyndrome #terminalillness"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7201717799255821610)  2023-02-19T04:23Z 183K followers, 2.3M engagements


"Also I was pregnant with Liam during that whole work up 😩 #sanfilipposyndrome #childhoodalzheimers #genetics #fyp Current photo At the time of diagnosis Current photo At the time of diagnosis"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7533705548475141431)  2025-08-01T19:45Z 183K followers, 1M engagements


"Liv has a terminal genetic disorder called Sanfilippo Syndrome. Its an extremely challenging disease with behavioral issues seizures and loss of all abilities. Complete regression. Its not an easy road but a road that teaches so much. Sometimes I just need to be reminded to be present. #sanfilipposyndrome #fyp #genetics #savingliv #childhoodalzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7604520224645319950)  2026-02-08T15:43Z 183K followers, 114K engagements


"Sanfilippo Syndrome is a neuro degenerative terminal genetic disorder caused by a single missing enzyme. Both parents have to be carriers and their children each have a 25% chance of getting it. Its currently not on the newborn screen and there is no FDA approved treatment available at this time. Life expectancy is mid to late teens. #sanfilipposyndrome #fyp #genetherapy #childhoodalzheimers #genetics"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7603778395931020558)  2026-02-06T15:44Z 183K followers, 162.1K engagements


"Glass child is a way to describe the sibling of a child with complex needs. They often feel overshadowed and unseen. While I focus a lot of this page on Liv rightfully behind the scenes I make every effort to make Liam feel just as loved. #sanfilipposyndrome #supersibling #glasschild #savingliv #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7603400379459472654)  2026-02-05T15:16Z [--] followers, 433.3K engagements


"February Update 💜 #sanfilipposyndrome #fyp #savingliv #childhooddementia #childhoodalzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7603134341782195469)  2026-02-04T22:04Z 183K followers, 31.9K engagements


"My daughter is an angel here on Earth and my son is a miracle I didnt know I would need. Im rich because theyre in my arms and love me back 🥹 #sanfilipposyndrome #fyp #iris #savingliv #childhooddementia When TikTok picks the music and its spot on 🥹 When TikTok picks the music and its spot on 🥹"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7600591333262134559)  2026-01-29T01:36Z 183K followers, 23.6K engagements


"Liv has a form of childhood Alzheimers called mucopolysaccharidosis type 3B also known as Sanfilippo Syndrome. A coping mechanism I have when overwhelmed with grief is to acknowledge small silver linings to her diagnosis 💜 #sanfilipposyndrome #fyp #light #dementia #alzheimers"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7600103660080745759)  2026-01-27T18:04Z 183K followers, 61.9K engagements


"Liv has a form of childhood Alzheimers called Sanfilippo Syndrome. It causes neuro and physical regression starting in toddler years leading to total loss of skills and a life expectancy of 12-20. We will continue to share Livs story so people can recognize the signs and symptoms of this. #sanfilipposyndrome #fyp #savingliv #genetics #autism"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7598602792327974157)  2026-01-23T17:00Z 183K followers, 103.2K engagements


"This one is about me Hopeful to use my platform to share my story and encourage others to be screened. #breastcancer #mammogram #cancerawareness #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7597107577264033037)  2026-01-19T16:17Z 183K followers, 82.6K engagements


"Saving Liv Store is open Tumblers travel mugs coffee mugs wine tumblers tanks tshirts sweatshirts youth and toddler tees #sanfilipposyndrome #savingliv #fyp #fundraiser"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7595627436226776375)  2026-01-15T16:34Z 183K followers, 21.2K engagements


"Grief is sneaky but I try to look at it like its a testament to how much love I still have to give her. Thank you to Andrew Garfield for that thought ❤ #sanfilipposyndrome #savingliv #fyp #grief #anticipatorygrief"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7595009066376662327)  2026-01-14T00:34Z 183K followers, 50.2K engagements


"I wonder if theyll repost this video Theyve created over [--] copycat Facebook pages. Almost immediately after the last one gets taken down 🙄#sanfilipposyndrome #savingliv #fyp #hacker #facebook"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7593863562058026253)  2026-01-10T22:29Z 183K followers, 24.2K engagements


"Feeling very hopeful leading into [----] 💜 As always thank you for the love and support for Liv and our family. #sanfilipposyndrome #savingliv #fyp #2026 #lysosomalstoragedisorder"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7593407991399943479)  2026-01-09T17:02Z 183K followers, 40.5K engagements


"Sanfilippo Syndrome is a degenerative terminal genetic disorder with a life expectancy of 12-20. It is caused by a single missing enzyme that breaks down a cellular waste product called heparan sulfate. So that accumulates and causes damage to all the cells in Livs body. #sanfilipposyndrome #fyp #cold #virus #sickness"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7589458846591044878)  2025-12-30T01:37Z 183K followers, 66.6K engagements


"Replying to @whatuknoabout. why we didnt pursue IVF #sanfilipposyndrome #salpingectomy #ivf #fyp"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7588164675649539341)  2025-12-26T13:55Z 183K followers, 71.1K engagements


"Merry Christmas First take 🙌🏻🤗😘 Childhood Alzheimers deserves to be shared and to take up space in this world. We will continue to fight for Liv and all the children affected 💜"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7587539737678712078)  2025-12-24T21:29Z 183K followers, 138.1K engagements


"Sanfilippo Syndrome is a degenerative lysosomal storage disorder caused by a single missing enzyme. It causes physical and cognitive damage and shortens life expectancy to mid to late teens. There is currently no cure. #sanfilipposyndrome #fyp #genetics #savingliv #lysosomalstoragedisorder"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7586362994846616846)  2025-12-21T17:23Z 183K followers, 372.4K engagements


"Thank you for all the love and support for our family this year and the past three years since Livs diagnosis. I appreciate you all more than you know and hope you have a Merry Christmas ❤ #fyp #savingliv #sanfilipposyndrome #christmas #christmaswish"  
[TikTok Link](https://www.tiktok.com/@saving_liv/video/7585603172576578830)  2025-12-19T16:14Z 183K followers, 35K engagements

Limited data mode. Full metrics available with subscription: lunarcrush.com/pricing