LIFESTYLE & COMMUNITY

Boy Was Diagnosed With The Rare "Childhood Alzheimer's", And His Family Is Fighting To Find A Cure

Date October 1, 2018 14:02

Carter's brave fight against "childhood Alzheimer's"

Jennifer and Samir Sarkar welcomed their son Carter in 2012. When he was born, Carter seemed quite healthy.

His parents started to grow concerned when he wasn’t reaching some milestones at age 1, but doctors assured the couple that their son would catch up eventually.

In 2014, Carter was diagnosed with chronic pancreatitis. You don’t normally see chronic pancreatitis in 2-year-olds, and there are only a few reasons why some toddlers develop the condition…

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In May 2016, Jennifer and Samir finally found out what was wrong with their son. Carter was diagnosed with Sanfilippo syndrome, which is sometimes referred to as “childhood Alzheimer’s”. This is a rare, progressive disease that damages the brain and causes affected children to lose speech and other skills and functions, such as walking and swallowing. Most children with Sanfilippo don’t live past their teens.

The Sarkars were shell-shocked when they heard the news. They decided they wouldn’t let the disease take their son away, so they put up a fierce fight against it.

The family partnered with Cure Sanfilippo Foundation and set up a crowdfunding page to raise money for a promising clinical trial. To date, they have raised more than $1 million! If they manage to raise enough money for the trial, it can help not only Carter, but hundreds of other kids with the syndrome.

 

The disease can progress very fast, so the Sarkars hope they can reach their goal in time. They still have the hope for a cure or at least an effective treatment that will keep Carter alive.

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What is Sanfilippo syndrome and how common is it?

Sanfilippo syndrome is a metabolic disorder known colloquially as “childhood Alzheimer’s” and scientifically as mucopolysaccharidosis type III (MPS III). According to the Sanfilippo Children’s Foundation, 1 in 70,000 children are born with the disorder.

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In Sanfilippo syndrome, there’s a lack of one of the enzymes that help cells get rid of metabolism byproducts. As a result, cellular waste accumulates, and that leads to progressive brain damage.

There’s no cure or effective treatment for this terrible disease, but there are some promising clinical trials which may give children with Sanfilippo a chance at life.

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