When Jennifer Sarkar took her then 3-year-old son, Carter, to a geneticist at the urging of a family doctor, she never expected to hear there was a chance her little boy was slowly succumbing to a rare genetic disorder.
“My heart broke,” Jennifer, 29, tells PEOPLE of the life-changing day two years ago. “To this day, I still get emotional about it.”
“You just feel horrible for your child, because no child should ever have to endure this much pain, this much suffering,” Jennifer, from Santa Clarita, California, says. “They should never know a life like this.”
According to theNational MPS Society, one in 70,000 newborns is born with Sanfilippo syndrome, with symptoms often appearing after the first year of a child’s life. There is currently no known cure for the disease.
Jennifer Sarkar
“In hindsight, I look at things and wondered if that was the disease, or if that was him,” Jennifer recalls. “Like, usually kids who have it fall behind their peers in preschool, and Carter was showing that. He was a little delayed compared to other students.”
Though he is still able to talk and play with his 8-year-old sister, Sophia, and his father, Samir, 6-year-old Carter recently began experiencing more debilitating symptoms of the disease, such as trouble keeping his balance. He often forgets where he is, even if he’s visiting a place he previously loved to go.
“I think the most difficult one for me is there are times where we take him to his favorite place that he may be excited to go to, and he’ll look up at me and you can tell he is completely lost and he has no idea how he got there, and he’ll scream to go back to the car.”
When this happens — whether it’s during trips to the beach, zoo or to Disneyland — Jennifer is often filled with sadness upon seeing her child struggle to comprehend his surroundings.
“We’ll go back to the car, and we’re both crying,” she says through tears. “He’s crying because he doesn’t know where he is, and I’m crying because… I know why this is happening, and I can’t change it.”
“We don’t have another option, but we’re the type of family to say if there’s a chance, we’re going to try,” Jennifer says. “We want to do single everything in our power to try to change his fate.”
As of Friday, the family has raised more than$130,000 after three days of fundraising.
The family believes that each and every cent will help the chance that Carter will be able to experience many more days to come.
source: people.com
