Jennifer and Samir Sarkar first started to worry that something may be wrong with their son, Carter, when he didn’t hit his 12-month milestones like his older sister, Sophia, had. They took him to the doctor and were told that, yes, he appeared to be developing a little more slowly than normal, but it was probably not a major issue. He would catch up soon enough. And so they waited.
But Carter did not catch up. It wasn’t until a few years later in 2016 that the Sarkars received the news that would change their lives forever. Carter had Sanfilippo syndrome, a rare metabolic disorder that is a result of an enzyme deficiency and causes fatal brain damage over time. The body’s cells become “clogged,” which impairs their function, particularly in the brain. The disease’s children who suffer from the disease often experience speech problems, developmental delays, behavioral issues, hyperactivity, sleep issues, heart problems, seizures and loss of mobility.
“You hear about the symptoms and what will happen to your child, and time just stopped. We knew we were now in a race against time,” Jen and Samir wrote in an email to Mom.me.
There is currently no cure or treatment for Sanfilippo syndrome, which means it will eventually be fatal for Carter unless a cure is discovered in time. The life expectancy for a child with Sanfilippo syndrome is about 15 years. The disease affects about 1 in 70,000 children, and Carter has type A, the worst and most common form of the syndrome.
“Sanfilippo syndrome is a parent’s worst nightmare,” the Sarkars wrote. “This disease is one that we had never even heard of before and never knew even existed. It is truly a race against time to save your child. No parent should ever have to watch their child suffer in pain and agony, which is why we are determined to change Carter’s fate. Our goal is to one day instead of having a doctor say, ‘I’m sorry, there’s nothing we can do for them,’ to say, ‘I’m sorry, but know that we have a cure!'”
Right now, Carter is doing very well. He’s still able to walk, talk, and eat by himself. He still runs and jumps and plays like other children. Over the course of the next few years, however, he will gradually slip away, losing his memory, his motor functions, and even his personality to this terrible disease.
“Without treatment, or an option of that, he’s not going to survive,” mourns Jennifer.
But despite the family’s pain and frustration, they are not giving up on their son, or on their hopes of saving other children from this dreadful disease. They’ve set up a GoFundMe page with a $1 million goal, and the donations go directly to Cure Sanfilippo Foundation to fund research on enzyme replacement therapy.
Watch the video below to learn more about Carter’s story.
Elizabeth Nelson is a wordsmith, an alumna of Aquinas College in Grand Rapids, a four-leaf-clover finder, and a grammar connoisseur. She has lived in west Michigan since age four but loves to travel to new (and old) places. In her free time, she. . . wait, what’s free time?