We are amassing a lifetime supply of medicine measuring cups. This is Merrick. He’s 11 and has Sanfilippo syndrome, a rare neurodegenerative disease that causes dementia in children. One symptom that has gotten worse over the past 6 months is headaches. 💔🤕 We only wish there was more we could do to help him 😔 #sanfilippo #childhooddementia #raredisease #headaches #approvehopenow
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We are amassing a lifetime supply of medicine measuring cups. This …
442 views1 month ago
TikTokhope.for.merrick
Bumblebee has always been his favorite Transformer. 🤖🐝 So this couldn’t have been sweeter for him. Merrick is battling Sanfilippo syndrome, a progressive neurodegenerative disease often called Alzheimer’s for children. He deserved this win 🏆 #sanfilippo #regression #childhooddementia #bumblebeetransformers #makeawish
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Bumblebee has always been his favorite Transformer. 🤖🐝 So this coul…
319 views1 month ago
TikTokhope.for.merrick
Merrick has Sanfilippo syndrome, a terrible progressive neurodegenerative disease that is ultimately terminal. If we had known back then we would have been so sad of course but also would have done everything we possibly could to slow down the skill loss we’ve seen over the past 6 years. Early diagnosis matters! If your child has any delays or is neurodiverse you should consider genetic testing. There is no downside to doing it. The best thing to happen is you learn nothing new! #sanfilippo #reg
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Merrick has Sanfilippo syndrome, a terrible progressive neurodegener…
444 views5 months ago
TikTokhope.for.merrick
I truly believe that without this disease, he would have taken the world by storm. This is my favorite video of 2026 (so far). My son Merrick is the most determined kid I know—driven, stubborn, and fiercely independent, no matter what Sanfilippo is trying to take away from him. Sanfilippo syndrome is a rare progressive disease that causes dementia in children. Here he is, proudly getting himself a drink of water from the sink. He has a little red reusable solo cup we got him just so he could kee
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I truly believe that without this disease, he would have taken the …
413 views2 months ago
TikTokhope.for.merrick
April 11 - The Elephant Man: Joseph Merrick’s Unique Path to Dignity
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A "freak show" or "educational"? Disability campaigner Adam Pearson has spoken out against an event in which a replica of the body of Leicester's Joseph Merrick, known as the Elephant Man, will be dissected in front of a live audience. https://bbc.in/3isZxVY | BBC Nottingham
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