Carson Burroughs loves sports. Mention soccer or baseball, and the 7-year-old lights up with excitement.
"I swing the bat," Carson said, showing off his bat and running around the living room. "I want to hit a home run!"
Carson was diagnosed with Sanfilippo Syndrome at the age of 5. The genetic disease causes progressive dementia in children, because of a lacking enzyme that is meant to break down cellular waste in the brain.
Sanfilippo Syndrome is rare — it affects only one in 70,000 births. There currently is no cure, and life expectancy is in the early teens. But Carson's family, with the support of their fellow parishioners at Immaculate Conception Parish in Dardenne Prairie, is raising funds for a cure someday, as well as awareness of the disease. Earlier this month, a dodgeball fundraiser was held at the parish for Carson.
Carson's parents noticed some developmental delays, and with the encouragement of his preschool teachers, an appointment was made with a neurologist. Because Sanfilippo has similar characteristics to autism spectrum disorder, Sara Burroughs figured that was the diagnosis. A routine MRI led to a genetic test, which revealed he had Sanfilippo.
Without the enzyme needed to remove the cellular waste in the brain, the disease slows down and blocks brain activity.
"The best way to describe it is childhood Alzheimer's," said Carson's father, Craig Burroughs. "People get that — they know what it is, because they've had impacted family members. That's the thing — the human body is such a wonderful thing. It's creating new cells and doing new things for you. But by doing that it creates that trash in there, and the normal body would take that our of the system in different ways. Carson is building all the good things, he just doesn't have the right enzyme makeup to take away the bad things."
For several months, the family kept the news to themselves as they started researching the illness. Once they found the Cure Sanfilippo Foundation, a national nonprofit organization dedicated to raising awareness and research to find a cure, Sara and Craig Burroughs began telling parishioners at Immaculate Conception what was going on.
The response was overwhelming.
"Within days people were offering to do fundraisers and offering Masses for him," said Sara Burroughs. "It all came very quickly."
Beyond the many prayers and Masses, parishioners have taken it upon themselves to organize fundraisers, including dinner auctions, the annual dodgeball tournament, and purple Cure for Carson T-shirts, which school students are allowed to wear on spirit days at school. Within the past year and a half, parishioners have held almost 20 different fundraisers — at least, that's as many as the family knows about. Approximately $150,000 to date has been raised for the Cure Sanfilippo Foundation.
"It's really the people from the parish who have made it happen," Sara Burroughs said. "There are people who are doing events all the time that we don't even know about, and they just show up with money."
Carson is now a first-grader at Ostmann Elementary School in the Fort Zumwalt school district. He remains involved at Immaculate Conception, playing on a soccer team and occasionally helping his parents as a greeter before Mass.
Carson considers the priests at the parish — Msgr. Ted Wojcicki and Fathers Henry Purcell and Alex Nord — his buddies.
"The Scripture quote over our baptismal font in Church says, 'You will be my witnesses to the ends of the earth.' Customarily I add, 'and that witness of love and generosity begins here in Dardenne Prairie,'" Msgr. Wojcicki said. "Our parish family is incredibly generous and their kindness to Carson and his family is yet one more example of that joyful and faithful witness."
The Burroughs family, along with Carson's two older sisters, Hannah and Addy, consider it a blessing to be part of a caring parish community. In fact, when the family moved here several years ago because of a job transfer — long before Carson's diagnosis — they visited several Catholic churches and kept coming back to the welcoming presence of Immaculate Conception. It seems God knew exactly where they were meant to be.
"I feel like God has intervened before we even knew about all of this," Sara Burroughs said.
>> Sanfilippo Syndrome
Sanfilippo Syndrome is a terminal genetic disease in which the body is missing an enzyme necessary to break down natural cellular waste. The waste builds up in every cell, especially the brain, causing severe damage that takes away independent skills and knowledge.
Children experience progressive dementia similar to Alzheimer's, stealing away their skills and knowledge, until they die, often in their teenage years. Symptoms are often similar to autistic behaviors; because the disease is rare (it affects only one in 70,000 births) sometimes children are misdiagnosed with autism at first. One in 133 people carry the Sanfilippo gene. Both parents must carry the gene to pass it to their child.
The Cure Sanfilippo Foundation is a nonprofit foundation that advocates for and funds research directed toward a cure and treatment options for patients with Sanfilippo Syndrome. To learn more, visit curesff.org
The Burroughs family also has a Facebook page called Cure4Carson.