Merrick was 4 years old in the beginning clip of this video. He’s 11 now — and he has fewer words and skills than he did back then. Sanfilippo syndrome causes childhood dementia. We work every day to keep him happy, protect the skills he still has, and share his story to raise awareness and keep hope alive for a cure. Follow our journey. Help us raise awareness. 💜 #ChildhoodDementia #SpecialNeedsParent #sanfilipposyndrome #LifeWithDisability #OurStory
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Merrick was 4 years old in the beginning clip of this video. He’s 1…
176 views2 months ago
TikTokhope.for.merrick
This was before we knew my son has childhood dementia It is due to Sanfilippo syndrome, a rare progressive disease that causes brain damage over time I wish we could go back… to laugh a little louder with him love him a little harder And join the fight against this disease with all our strength before it had already taken so much 💜💜💜
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This was before we knew my son has childhood dementia It is due t…
1K views2 months ago
TikTokhope.for.merrick
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 views2 months 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 views2 months ago
TikTokhope.for.merrick
POV: your son likes the people mover almost as much as the roller coasters 🎢 Merrick is autistic and has Sanfilippo syndrome, a rare disease that causes childhood dementia. Slowing down helps us enjoy the time we have with him. A good reminder we don’t always have to move fast to get the best thrills.
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POV: your son likes the people mover almost as much as the rolle…
311 views3 months 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
This is what childhood dementia looks like… This is Merrick, he has Sanfilippo syndrome and is regressing and losing more words and skills every day because of this progressive neurodegenerative disease. He is in a race against time to get treatment that could save his life. #sanfilippo #autism #childhooddementia #diagnosis #regression
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This is what childhood dementia looks like… This is Merrick, he ha…
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