As every parent will tell you, having a child is one of the best gifts in the world.
They'll also mention it's a horrendous tragedy for their offspring to pass away before themselves, but sadly that just might be the case for the Sarkar family, whose son Carter was diagnosed with a rare genetic disorder at only three years old.
After meeting with a geneticist at a doctor's urging, it was revealed Carter was suffering from Sanfilippo syndrome, otherwise known as Childhood Alzheimer’s.
This disease is classified as a disease where the body suffers a deficiency of a specific enzyme needed to break down toxic waste. As the toxins build up in the nervous system, it begins to erase everything a child has learned in only a few years.
"My heart broke," Jennifer Sarkar, 29, told PEOPLE about when she found out about her son's illness. "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," the mother-of-two continued. "They should never know a life like this."
According to the National MPS Society, Sanfilippo syndrome affects 1 in 70,000 children, with symptoms typically appearing in the first year of a child's life. In most cases, it'll children won't reach adulthood and there's no cure.
"In hindsight, I look at things and wondered if that was the disease, or if that was him," Jennifer explained. "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."
Out of the four types of Childhood Alzheimer’s, Jennifer revealed Carter has Sanfillippo type A, which is known to be the most common and severe.
She said while Carter is still able to play with his father Samir and eight-year-old sister Sophia, there are times he's become confused over his surroundings, including trips to the beach, zoo and Disneyland.
"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," Jennifer admitted.
"We’ll go back to the car, and we’re both crying,” she continued. "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."
There's still hope
Despite the frightening diagnosis, Carter's family isn't giving up hope.
Jennifer and Samir have started a fundraiser called Saving Carter, to raise $1 million for a clinical trial funded by the Cure Sanfilippo Foundation. While it'll benefit all of the kids affected by this incurable disease, they hope Carter will earn a place in one of the limited spots available.
"The research is a novel enzyme replacement therapy that has had remarkable results of helping fix the brain in closely related diseases," Sarkar wrote on the GoFundMe page. "We are currently racing against time to fund this trial and get it up and running. It will help Carter and so many other kids also hoping for a chance at life."
"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 added. "We want to do single everything in our power to try to change his fate."
"He’s the light of my life, he is funny, he is smart, and he is kind, and he is so loving," Jennifer concluded. "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.'"
Although Carter's story isn't over yet, check out these inspirational children who have received their happy ending:
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