Carter has Sanfilippo syndrome, a rare and fatal condition
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Carter has Sanfilippo syndrome, a rare and fatal condition
1.3K views3 months ago
YouTubeJen Sarkar
Part 3 and final part of our our GI doctors helps get C-Money diagnosed with Sanfilippo syndrome. unfortunately Sanfilippo syndrome is a rare, genetic disease. Both parents have to be carriers in order for a child to get it. Both my husband and I had no idea that we were carriers until Carter was diagnosed and we had never even heard of this disease. The best way to describe it is as a childhood version of Alzheimer’s. It takes literally everything from these children. They will develop typicall
1:14
Part 3 and final part of our our GI doctors helps get C-Money diagnosed with Sanfilippo syndrome. unfortunately Sanfilippo syndrome is a rare, genetic disease. Both parents have to be carriers in order for a child to get it. Both my husband and I had no idea that we were carriers until Carter was diagnosed and we had never even heard of this disease. The best way to describe it is as a childhood version of Alzheimer’s. It takes literally everything from these children. They will develop typicall
22.3K views10 months ago
FacebookCarter's Challenge
Part 2 of how we came across C-Money’s fist genetic diagnosis #storytime #carterschallenge #medicallycomplex #parenting #momlife #caveman #cavebaby #ditl #chronicpancreatitis | Carter's Challenge
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Part 2 of how we came across C-Money’s fist genetic diagnosis #storytime #carterschallenge #medicallycomplex #parenting #momlife #caveman #cavebaby #ditl #chronicpancreatitis | Carter's Challenge
147.6K views11 months ago
FacebookCarter's Challenge
camila on Instagram: "this is a timelapse of Carter (@carterschallenge)! ❤️💙 - Carter has a rare, progressive, and fatal disease called Sanfilippo Syndrome. this affects 1 in 70,000 children and it’s a genetic condition that causes severe damage to the body and mostly the brain. this disease is often compared to Alzheimer’s, but for children. i created this portrait and this post to help spread awareness for this disease. i also donated $100 using some of the money i made from commissions to th
camila on Instagram: "this is a timelapse of Carter (@carterschallenge)! ❤️💙 - Carter has a rare, progressive, and fatal disease called Sanfilippo Syndrome. this affects 1 in 70,000 children and it’s a genetic condition that causes severe damage to the body and mostly the brain. this disease is often compared to Alzheimer’s, but for children. i created this portrait and this post to help spread awareness for this disease. i also donated $100 using some of the money i made from commissions to th
37.3K viewsApr 4, 2021
Instagram
POV- we’re caveman and I’ll telling you how we came across C-Money’s fist genetic diagnosis #storytime #carterschallenge #medicallycomplex #parenting #momlife #caveman #cavebaby #ditl #chronicpancreatitis | Carter's Challenge
2:49
POV- we’re caveman and I’ll telling you how we came across C-Money’s fist genetic diagnosis #storytime #carterschallenge #medicallycomplex #parenting #momlife #caveman #cavebaby #ditl #chronicpancreatitis | Carter's Challenge
65.1K views11 months ago
FacebookCarter's Challenge
They’re losing their voices. The ability to walk. The ability to eat by mouth. And while Sanfilippo syndrome marches on, the FDA has delayed a promising treatment despite acknowledging the science is strong. More than 21,000 people have signed our letter urging the FDA to act with urgency. But we only have until August 6 to show them how many people care. Please sign the letter and share this post to tell the FDA our kids can’t wait. Link to the letter is in our bio and story. Please lend us you
0:26
They’re losing their voices. The ability to walk. The ability to eat by mouth. And while Sanfilippo syndrome marches on, the FDA has delayed a promising treatment despite acknowledging the science is strong. More than 21,000 people have signed our letter urging the FDA to act with urgency. But we only have until August 6 to show them how many people care. Please sign the letter and share this post to tell the FDA our kids can’t wait. Link to the letter is in our bio and story. Please lend us you
4.6K viewsAug 4, 2025
FacebookCarter's Challenge
Part 3- the final part of we came across C-Money’s fist genetic diagnosis of chronic pancreatitis #storytime #carterschallenge #medicallycomplex #parenting #momlife #caveman #cavebaby #ditl #chronicpancreatitis #ctrcgene | Carter's Challenge
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Part 3- the final part of we came across C-Money’s fist genetic diagnosis of chronic pancreatitis #storytime #carterschallenge #medicallycomplex #parenting #momlife #caveman #cavebaby #ditl #chronicpancreatitis #ctrcgene | Carter's Challenge
47.2K views11 months ago
FacebookCarter's Challenge
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Carter has Sanfilippo syndrome, a rare and fatal condition. But today? He kicked a ball at the park And we don’t take that for granted💜 #carterschallenge #specialneedsmom #rarediseasewarrior #caregiverlife #childhoodalzheimers #navigatingaterminaldisease | Carter's Challenge
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FacebookCarter's Challenge
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