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

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

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

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

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