When Chattanooga teen Benjamin Dendy went to hit golf balls recently, he thought he was just having brunch before seeing his grandmother off.
But his family and friends had just gotten a once-in-a-lifetime experience from the Make-A-Wish Foundation of Georgia.
Benjamin is waiting on a liver transplant, and the Atlanta Falcons had just made his teenage dreams of meeting the team come true: He’d been to a Falcons game, met the team and witnessed a pregame coin toss.
What Benjamin didn’t know was that Falcons quarterback Matt Ryan wanted to do more. “Brunch with grandma” was code for a golf surprise from Ryan.
“Matt Ryan didn’t have to do this; he didn’t have any obligation at all,” Benjamin’s mother, Heather Dendy, said. “It was so neat. Matt Ryan was there for hours, and at no point did it seem like anything was forced. He was genuinely interested in the kids. He wasn’t, at any point, separated from the kids. It was wonderful.”
Benjamin, a McCallie School student, looks like a typical teenager but had his first operation when he was 64 days old—and he’s been waiting for a liver transplant ever since.
He was born with biliary atresia.
Everyone with the diagnosis needs a transplant, Heather said.
Every year since Benjamin was born, the doctors told his family that year needed to be the year for the transplant or he might not live.
And although his condition isn’t getting better, the doctors have stopped telling the family that he may die soon without a transplant, not because he won’t, but because—so far—he’s surprised doctors.
“He’s been doing phenomenal and mystifying doctors, actually,” Heather said. “We don’t know why he’s doing as well as he is.”
But doing well with his condition is vastly different from having a good quality of life, Heather said.
The Make-A-Wish Foundation helps make dreams come true for children with life-threatening illnesses.
Heather said that her family didn’t apply; a nurse or doctor they’ve worked with must have contacted the organization, she said.
The Make-A-Wish team contacted the family when Benjamin was younger, but he could never settle on an idea he felt passionate about.
But as a teenager, he developed a better idea of what he really wanted, Heather said.
“What’s so neat is I had no idea that he was a huge Falcons fan,” Heather said. “He knows the stats, all the history—everything about them.”
When Ryan sneaked up behind Benjamin as he was golfing, Heather saw him, but Ryan urged her to be quiet.
Ryan offered advice on Benjamin’s golf swing, and Heather said her son’s initial reaction was probably something like, “Who is coming up behind me telling me about my swing?”
But when he turned around and saw one of his idols, the surprise was palpable.
The disease and the waiting
In addition to biliary atresia, Benjamin has hypersplenism, which affects his kidneys, heart and digestion, among other things, Heather said.
His family is working to get him on a transplant wait list at a second hospital. There are rules about how far away a person can be from the hospital they list with, Heather said.
She described the process her family has experienced in their years of waiting. Heather said that Benjamin has been given points based on a blood test. The person with the highest number of points is generally higher on the wait list, she said.
But the blood test doesn’t take into consideration enough factors, she said.
Heather advocates for more human input to be included as part of the process so doctors and others involved can take quality-of-life factors into consideration.
If doctors got more input, she thinks Benjamin would have already had his transplant.
Although Benjamin doesn’t look sick, his disease impacts him significantly.
“One thing that affects him most profoundly is that he was born into a playful, competitive, sports-oriented family,” Heather said. “He’s always had to be on the sidelines.”
He can’t play most sports because an elbow to the stomach could cause severe internal bleeding, Heather said.
Benjamin also struggles with the weight of having a life-threatening illness.
Sometimes, he’s frustrated by the waiting or that he can’t be more like a typical teenager.
Other times, he’s angry. But, sometimes, he’s hopeful that he can be the person who helps find the cure.
Benjamin is part of two studies: Doctors are studying his DNA and that of his parents in hopes of figuring out how to slow the progression of the disease, which doctors think is attributed to a virus, Heather said.
As he’s gotten older, he’s learned to put on a positive attitude, Heather said.
“He rides the wave [of emotion],” she said. “These kids put on a good face because they are used to having people worrying … [The effects on him are] so much deeper and intrinsic than we will ever understand.”
Heather started Southern Bend Yoga Festival to raise money for families like hers.
Not only has the Dendy family been affected by Benjamin’s trials, they’ve seen other families who are struggling.
Heather said her family is fortunate to be able to take Benjamin where he needs to go to get help. They have privileges other families don’t.
For example, the Dendys once stayed in a hospital room next to a family whose child also needed a transplant. The father was working four jobs and the mother had holes in her shoes, Heather said.
“Yoga has kept me sane through all this,” she said.
Other disease organizations have walks/runs or other events to raise awareness, so why not have a yoga event, she said.
The upcoming festival will benefit Children’s Organ Transplant Association and raise awareness about organ donation.
Organizers will be encouraging attendees to sign the backs of their driver’s licenses to become organ donors.
“I believe when you give, it’s a ripple effect,” she said. “When someone passes and they give their organs … it creates a profound difference—a shift. It’s this 1-degree shift that totally sends their boat in another direction.”
The fundraising festival is slated for Sept. 30. Click here for more information and to get tickets.