Being told your child has a rare disease is devastating. Then imagine being told that there’s absolutely nothing you can do about it.
That was the reality for these parents, whose son was diagnosed with MPS III when he was only 5 years old.
MPS diseases prohibit the body from breaking down stored nutrients. The more nutrients are stored instead of broken down, the greater developmental delays become for the child.
MPS III, or Sanfilippo Syndrome, is when this buildup of nutrients occurs in the brain cells. Children with the disease slowly lose the ability to walk and talk.
There are no treatments. There is no cure.
Despite the grim diagnosis, the Burroughs family is making the most of their time with their son. Carson is now 6 years old. He is a happy boy, living life every day as though nothing is wrong. He plays kickball and goes to school just like every other little boy. The reality of his disease may not be clear to him, but the love his parents and community show him is.
The goal for the Burroughs is to make the public more aware of MPS III.
They understand that with greater awareness comes greater contributions to research and a greater chance of finding a cure. While a discovery may not be made within Carson’s lifetime, perhaps his story can help save another little boy or girl.
Carson’s parents have hosted awareness event after awareness event, advocating for funding and research for MPS III. Their community of friends and neighbors shows up in support again and again.
The Burroughs family is the definition of strength and passion, and a perfect example of the need for accelerated research.