Carsyn Long had his first open-heart surgery before he turned age 1. He had three aneurysms removed from his heart, too.
But through it all, he beat the odds after doctors once told his mother, Lauren Long, he wouldn’t make it through the night.
“He has gone through so much,” Lauren said. “More than any kid should have to endure.”
Now after treatment, he is in remission and has a chance to live it up like a kid should without having to worry about cancer, chemotherapy, surgery or aneurysms.
Carsyn, 8, will be going to Walt Disney World at the end of February, courtesy of Bert Weiss, host of “The Bert Show” on radio station Q100 (WWWQ-FM) in Atlanta, with 13 other kids and families.
A dire prognosis
Carsyn was diagnosed with congenital infantile fibrosarcoma of the heart when he was just 7 months old. According to his mother, doctors said it was the first known case of that type of cancer.
On Aug. 6, 2009, doctors at Egleston Children’s Hospital met with Lauren and told her she had two options: Have him undergo dangerous emergency surgery or just wait longer for Carsyn to receive a heart from the heart-transplant list.
Neither was a good option, but without choosing the former option right away, doctors didn’t give Carsyn any hope. So, they moved a bed into his hospital room so Lauren could lay with him and hold him as he passed away that night. But that never happened.
He made it through the night and had the surgery to remove the aneurysms.
‘Make them feel as special as possible’
Weiss started Bert’s Big Adventure in 2002 to give children who have or have had chronic or terminal illnesses a chance to go on an all-expenses-paid trip to Disney.
“The fact that Bert’s Big Adventure is doing this for my son, finally rewarding him for everything he’s endured and gone through, is just beyond meaningful,” Lauren said, fighting back tears.
“Our goal is to make them feel as special as possible,” Weiss said. “And being honored for five straight days, I think it’s pretty special for them.”
The process for selection is pretty difficult, which is why Weiss leaves it up to medical professionals. They search through candidates and make recommendations to Weiss and his team.
The only requirements are that the children be between ages 5 and 12, live in “The Bert Show” listening area, prove financial need and have never been to Disney.
Carsyn fell into that category and was surprised on Christmas morning when he opened a letter from Bert’s Big Adventure telling him that out of the 120 applications submitted, he was chosen to go to Disney. Ever since, he’s been anxious to leave for the trip.
“Sometimes we look up Disney rides to see which ones we’re going to go on,” Carsyn said.
Helping families connect
Carsyn may have a few more doctor’s appointments than the other kids, but other than that, he’s just like them.
He’s in the third grade at Centennial Arts Academy. He loves cheese sticks. He likes watching “America’s Funniest Home Videos.” He wants to be a biologist when he grows up.
Carsyn was born in Jacksonville, Fla., but he and his mom moved to Dacula to be close to family just after he was born. That’s when his symptoms started showing and Lauren said she doesn’t think he would have made it without the move, which brought them closer to doctors. In 2016, they moved to Gainesville.
Lauren said this has been Carsyn’s best year yet. He’s even playing basketball for the first time at the North Hall Community Center. He simply likes having fun, which is what Bert’s Big Adventure has tried to create for children over the past 16 years, and what Weiss hopes to provide for Carsyn.
“I think everybody and the staff is really pretty intimate with the families,” Weiss said. “We purposely keep it really, really small to make sure that we can be connected to the families at all times.”
Going to Disney World will be a unique trip for Carsyn and his family since they don’t get to spend a lot of time together. Between Carsyn going to doctor’s appointments and school, and with Lauren and her fiance Calvin Kennison working, there isn’t time to relax and enjoy time with each other.
That’s all Lauren wants for her son. She said he’s had to grow up much faster than most kids should, and going to Disney will give him a chance to be a kid and for her to be a mom.
“When he was born, I didn’t know all this was going to happen,” Lauren said. “But this is what I’m here for, to be a mom.”