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There are a couple of moments in the heart-wrenching video “The Last Chance to Save My Son’s Life From Childhood Alzheimer’s” when that child’s father, Samir Sarkar, lovingly known to hundreds of Hollywood insiders as Coach Samir, chokes back tears.
One comes when he describes what it’s been like for his family of four — including his wife, Jen; daughter, Sophia; and son, Carter — to face the fatal diagnosis of the 6-year-old Carter’s illness, known as Sanfilippo syndrome. “All of our dreams, all of our ideas of what Carter was going to do with his life and the time that we were going to spend together all stopped,” Sarkar says, pausing to catch his breath as his eyes fill with tears. “It was like somebody put a time clock on both of our relationships.”
Named for Sylvester Sanfilippo, the pediatrician who first described the disease, the syndrome is often referred to as “children’s Alzheimer’s.” It’s a neurodegenerative disease affecting 1 in 70,000 children. According to the Cure Sanfilippo Foundation, “effects on the brain become apparent between 2-6 years of age — speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. … Children go on to experience progressive dementia similar to Alzheimer’s, stealing away their skills and knowledge, until they pass away, often in their teenage years.”
It’s a grim future made even more bleak with no treatments or cures available, something the Sarkars are well aware of, which is why they’ve launched a GoFundMe page to raise $1 million in one month for a clinical trial in the hope that Carter would be accepted before his brain is too severely damaged. It’s another timeclock, but one the family hopes will end with a promising treatment rather than emotional devastation.
As of Wednesday afternoon, the 15-day old campaign had raised $279,873 toward that goal with the help of a long list of celebrities and notable names: Selena Gomez, Judd Apatow, Debra Messing, Jonah Hill, Jack Black, Josh Groban, Maria Shriver, Sidney Poitier, Jamie Lee Curtis, Kate Mara, Nicholas Hoult, Scott Eastwood, Karen Gillan, Meghan Trainor, Maddie Ziegler, Elizabeth Berkley, Monty Python’s Eric Idle, casting director Francine Maisler, and rock bands Green Day and Panic! at the Disco.
“Coach Samir has played a huge part in the lives of my children and many children in the Los Angeles community,” posted stylist Rachel Zoe in trying to rally her followers to back the fundraiser. Wrote Curtis: “Why are we alive? We have to be here for a reason. That reason has to be to help other people. It’s really that simple. If you feel you can help these people please do so. Many need help. Today they get to the front of my line.” Groban posted: “In a just world, Carter and kids like him would have the funds they need to cure this awful disease. But they need our help. Was shown this story by a friend. Heartbreaking.”
Legendary casting director Francine Maisler (12 Years a Slave) tells THR that Coach Samir taught her kids “to not only do sports but be good human beings.” She added: The world feels a bit out of control right now. So many people have reached out to help Carter. This renews my faith in mankind. My sons went through their piggy banks and emptied them out so they could give everything to Carter.”
Samir and Jen Sarkar own and operate Fun & Sports, an L.A.-based company specializing in sports classes, group/private lessons, birthday parties, seasonal and day-off camps, babysitting and nanny placement, among other services. “I couldn’t be more blessed to work with parents who are showing support and spreading the word with their millions of followers,” Samir Sarkar, who has operated Fun & Sports for 25-plus years, tells The Hollywood Reporter. “It’s more than we could have ever asked for.”
“Unbelievably humbled and blessed” is how Jen Sarkar describes the feeling of watching a quarter-million dollars raised thus far on behalf of her son. “We are true believers that it takes a village to raise a child. We consider everyone a part of Carter’s village now,” she said by phone this week. “They are giving him a chance at life.”
Life for Carter is challenging as his speech continues to fade, but his mother says he still runs and plays with his big sister, and he finds joy in dancing to Taylor Swift’s “Shake It Off” and songs by Bruno Mars. “He will always dance for those artists,” she says with a laugh. Also notable: Carter grew up wearing a No. 87 New England Patriots jersey in honor of his favorite player, Rob Gronkowski.
The MVP of the family, however, may be sister Sophia. “She’s an angel,” Jen Sarkar says of how their oldest child handles her brother’s illness. “She is wise beyond her years, and she handles it with so much grace and poise. She’s at the doctor’s appointments and therapy with us. She knows he has Sanfilippo and is aware he will pass away if this doesn’t work. We couldn’t have asked for a better daughter.”
The family is putting a lot of faith in the campaign, and Jen Sarkar says she knows that it’s a big gamble because even if the clinical trial gets underway, Carter would still have to apply and be accepted. It’s a risk they’re willing to take. “The alternative is so much worse, so we have to try,” she says. “We know what the next five years will be. He will lose his speech, the ability to swallow and he’ll have seizures. Eventually, he’ll be bedridden and in hospice care. We are trying everything in our power to change this.”
Why are we alive? We have to be here for a reason. That reason has to be to help other people. It’s really that simple. If you feel you can help these people please do so. Many need help. Today they get to the front of my line.https://t.co/oa4Ty8T1UL
— Jamie Lee Curtis (@jamieleecurtis) June 2, 2018