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…
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TikTokhope.for.merrick
Merrick’s first day of kindergarten was such an exciting day for our family. Now we look back on this video with heartbreak. Even a simple question like “where is the van” is beyond Merrick now. Sanfilippo syndrome is something I wouldn’t wish on even the worst people in this world. It feels that much more unfair that the best little souls are the ones forced to fight this disease they can’t beat. There is a gene therapy trapped in the slow government approval process. Share his story to help ra
Merrick’s first day of kindergarten was such an exciting day for our f…
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This is Merrick he’s 11 now and last year we found out he has Sanfilippo syndrome. It’s a progressive neurodegenerative disease —basically dementia in children. For the past 10 years on the weekend after Thanksgiving we have gone to a local farm to get a tree. This year it doesn’t feel possible because Merrick is in a phase of the disease where kids are extremely impulsive and destructive. We had been hoping a promising gene therapy treatment would be available to him earlier this year. But it’s
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This is Merrick he’s 11 now and last year we found out he has Sanfilip…
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1.5K views · 28 reactions | Merrick has a rare neurodegenerative disease called Sanfilippo syndrome. We were excited to see a picture of him being a helper at school this week. He has struggled with tasks his whole life but recently things have been getting harder and harder for him as he loses skills. He was always the sweetest little helper. | Hope for Merrick | Facebook
1.5K views · 28 reactions | Merrick has a rare neurodegenerative dise…
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1.3K views · 36 reactions | As the years progress so does his...
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1.3K views · 36 reactions | As the years progress so does his...
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💜This is Merrick💜 He has a rare progressive terminal disease called Sanfilippo syndrome. He was diagnosed with speech delay when he was 2, then autism and ADHD when he was 4. He started to regress when he was 5/6 years old and we had no idea why. I searched for late regression in autistic kids and never found any answers. Last year when Merrick was 10 we were doing genetic testing for an unrelated eye disease that runs in my family and were blindsided by the results... We don’t know how long w
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💜This is Merrick💜 He has a rare progressive terminal disease calle…
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