Family raises money for child with rare disease known as childhood Alzheimer’s

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At the young age of four, Declan’s parents discovered he had a rare genetic disease. 

“He is currently fighting Sanfilippo. Which is also known as childhood Alzheimer’s. These kids they eventually lose the ability to walk, talk, feed themselves. It progresses, and they pass away typically at a young age,” said Declan’s aunt Kelly Martin. 

At first, he went through several series of tests and was misdiagnosed. 

“A lot of the times, they thought it was Autism or a form of Aspergers or something, that’s delayed,” said Martin.

The Cure Sanfilippo Foundation website states that one in 70,000 kids are affected by this fatal condition. 

“Both parents have to be carriers of the disease in order for it to have a 1 in 4 shot of passing it onto the children,” said Martin.

There are 4 types of Sanfilippo. A,B, C and D. While type D is one children can live with, Declan is type B. His family is coming together to raise money for research.

“He’ll progress to a certain state and then he’ll start to regress. So they go backwards. We’re hoping the more we talk about it, the more people understand the disease, the more we can work to getting a cure,” said Martin. 

To donate the cause click here and to visit Declan’s Facebook page click here.

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