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.”
After testing, Carter was officially diagnosed with Sanfilippo syndrome, also known as Childhood Alzheimer’s, which is a progressive disease caused by a missing enzyme meant to recycle cellular waste. Since there is no way to dispose of it, the waste accumulates in the brain and eventually causes significant damage to the organ. Over time, this can cause loss of speech and cognitive skills, intellectual disabilities, cardiac issues, seizures, inhibited mobility and dementia, according to the Sanfilippo Children’s Foundation. The disease typically claims the lives of patients before they reach adulthood.
“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 the National 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.
“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.”
In a last-ditch effort to save Carter’s life, the family recently started a GoFundMe page, called Saving Carter, to raise $1 million in a month to go toward a clinical trial funded by the Cure Sanfilippo Foundation. The trial consists of an enzyme replacement therapy that has shown positive results in improving brain function in diseases similar to Sanfilippo syndrome.
“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.
“It’s incredible to see so many people touched by Carter’s story, and just being a part of his village,” Jennifer says. “We could not do this alone and we’re so eternally grateful to each and every person who has donated or shared, because that’s the only way we are going to reach the goal.”
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The family believes that each and every cent will help the chance that Carter will be able to experience many more days to come.
“He’s the light of my life, he is funny, he is smart, and he is kind, and he is so loving,” Jennifer says. “Carter enjoys every single day to the fullest, and he truly lives by the motto we came up for him, which is, ‘Live today, hope for tomorrow.’ “