(SOURCE) Imagine knowing your child has a disease that will one day take their life. A disorder so rare, there’s no treatment and no cure.

It’s the reality that a St. Charles County family lives with every day. Their mission? To make their son’s life memorable and to make others more aware.

Sara Burroughs says playing kickball with his classmates is one of her son’s favorite things.

“He is a pretty, for the most part, a pretty happy go lucky boy,” said Sara. “He loves being with his sisters and his friends.”
       
Carson, 6, is a kindergartner at Ostmann Elementary in O’Fallon, Missouri. He’s living life to its fullest and his parents wouldn’t have it any other way.

“He has no idea what’s in store for him, so in that aspect it’s a lot harder for us than it is for him,” said Sara.

Last year doctors diagnosed Carson with a rare and terminal disorder called Sanfilippo Syndrome.

“Neither of us had any idea what it was, and then to find out that it’s something that we can’t do anything about, that’s really tough as a parent to know that we really can’t do anything to help our son,” said Sara.
Sanfilippo Syndrome is part of a group called MPS diseases.  Sanfilippo or MPS III is a metabolic disorder where the body can’t properly break down stored nutrients.  Dr. Amelia Kirby at SSM Health Cardinal Glennon Children’s Hospital is one of Carson’s doctors.

“What happen is when that storage gets too great it causes damage to the cell and in Sanfilippo Syndrome that damage is happening in the brain cells, which is what leads to the developmental delay and the loss of skills,” said Dr. Kirby.

There’s no treatment or cure for Sanfilippo Syndrome.  Carson’s father, Craig, says the family’s church community and friends at Immaculate Conception Catholic School are helping raise awareness.

“We have cure for Carson nights,” said Craig.  “We’ve probably had 8 to 10 different fundraising events and we tap into those same friends and family for those, but they show up every single time.”

The events raise money for research and are an opportunity to spread the word about a disease most people know nothing about.

Monsignor Ted Wojcicki is the Pastor at Immaculate Conception Parish.

“Whenever there’s awareness, it’s an opportunity for more support which is in turn an opportunity for more research, which in turn is an opportunity to find a cure,” said Msgr. Wojcicki.

“We pray every day about it,” said Sara. “That’s our hope, is that this gene therapy treatment that is out there will be the next greatest thing, and not only for him, but for many, many genetic diseases.”

And while they know it may not come soon enough to save Carson, they’re cherishing every moment they have with him.

“That’s why we focus on today and then tomorrow it will be focusing on tomorrow, because he’s a normal kid and we want to enjoy that.”

The disease will gradually rob Carson of the ability to walk and talk. To learn more about a Cure for Carson visit his Facebook.

© 2017 KSDK-TV

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