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…
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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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The tragic life of Joseph Merrick
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Genealogy- A Life in Time- Joseph Carey Merrick
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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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As the years progress so does his disease. Merrick has Sanfilippo syndrome, a rare disease that causes childhood dementia. There is a gene therapy that has proven to be effective in clinical trials and could save his life but it is stuck on a shelf while we wait for the long slow approval process. I just want someone in the government to please pay attention to our kids. They need your help to speed this up. #approvehopenow #sanfilippo #childhooddementia #raredisease #fda | Hope for Merrick
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As the years progress so does his disease. Merrick has Sanfilippo sy…
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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
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