Support Anderson on his LCC Labrune syndrome journey

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Support Anderson on his LCC Labrune syndrome journey

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Anderson a 4 year old little boy who has had seizures since he was 2 months old has recently been diagnosed with Labrune syndrome. This has been a long 4 year process to figure out what Anderson has. Multiple hospital stays and tripes to Boston mass general hospital.

Labrune syndrome, also known as Leukoencephalopathy with Calcifications and Cysts (LCC), is a rare genetic disorder characterized by abnormalities in the brain's white matter, along with the presence of calcifications and cysts. It's a type of leukodystrophy, meaning it affects the white matter, which is crucial for transmitting nerve signals. The condition is caused by mutations in the SNORD118 gene and is inherited in an autosomal recessive manner. 

Even though Anderson looks like a healthy little 4 year old. There are chances over time Anderson could lose motor skills. Not being able to walk, talk and eat. We are using this gofund me to help Anderson and his family out. At this time there are no treatments for this rare genetic disorder. But there are trials and doctors he can see. Anderson already heads to Boston to see his leukodystrophy doctors but he will also be going to Washington DC to see a Labrune syndrome genetic doctor. There is also a trail medication Anderson can test out. While this is a trial medication the cost will have to come out of the pockets of Anderson parents. This medication will slow down the growth of the cystic in his brain. We hope you can help out this family to make sure Anderson gets to live a normal life.

Organizer

Danielle Brown
Organizer
Hope Valley, RI
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