It’s a bright, bluebird sky morning outside Fraser, Colo., and 13-year-old Tanner is preparing to go for a ride on Amy, his beloved therapy horse.
When he first started horseback riding through the National Sports Center for the Disabled, Tanner could barely stay upright and would tire out after 10 minutes. Now, he rides Amy for over an hour, holding the reigns proudly as his therapy team guides the horse through various exercises.
Tanner’s mother, Mindy, watches as the horse breaks into a trot and Tanner’s face breaks into a huge, beaming smile.
“He’s so full of life,” she says. “Nothing gets this kid down.”
Watching Tanner ride, it’s hard to believe that he used to have debilitating seizures on a daily basis. Yet just a few years ago, it was so bad that Tanner – typically a joyful, energetic kid – could barely stay awake during the day.
“The seizures were taking over his life,” recalls Mindy.
Tanner was 6 months old when his parents first began to worry that something was wrong. He missed several developmental milestones, so his parents had him evaluated at Children’s Hospital Colorado.
“At first they though it was Cerebral Palsy,” explains Tanner’s father, John. “We later found out that it was bilateral Schizencephaly.”
This a rare birth defect causes “clefts” or scarring on the brain. The diagnosis was devastating. Tanner’s brain abnormalities made it extremely difficult for him to walk, talk or feed himself. Eventually, his limbs became twisted to the point that he had to be in a wheelchair at all times. And his seizures grew to be relentless.
That’s when the family met Dr. Kelly Knupp, a Children’s Colorado pediatric neurologist. She helped the family to secure the necessary authorizations to treat Tanner with a groundbreaking anti-seizure medication. She also introduced Tanner to a special ketogenic diet – high fat, no sugar, no carbs – that has been shown to limit seizures in certain patients. Since starting his new treatment regimen, Tanner’s seizures have nearly disappeared.
Then there was Dr. Frank Chang, a Children’s Colorado orthopedic surgeon who performed four life-changing surgeries on Tanner to rebuild his contorted feet and hips and lengthen his muscle tendons. The hip surgery took nine hours to complete.
“That was a rough one,” says John. “He was in a lot of pain. But Dr. Chang helped Tanner to walk again.”
To further enhance his mobility, doctors also surgically implanted a pump into Tanner’s body that releases medication to help relax his muscles.
The little things
Beyond providing world-class medical care, Tanner’s parents say it’s the “little things” that make Children’s Colorado truly special. Like when Dr. Chang made Tanner a personalized Spiderman cast after his surgery. Or how Homer, their favorite chef in the hospital cafeteria, always remembers Tanner’s special omelet order.
“It doesn’t feel like a hospital,” says Mindy. “It feels like a community of people who are there to help us. They have supported our family through everything – both inside and outside the hospital.”
Today, Tanner is back to doing the things that he loves. He skis at least a dozen times a season. (His mom jokes that he has two speeds on the ski hill: “fast and faster.”) He’s done zip lining, indoor sky diving and gone on a helicopter ride. And of course he goes horseback riding as often as possible.
“We try to concentrate on what he can do, not what he can’t do,” says Mindy. “And thankfully, today, there’s not a lot that he can’t do.”
Tanner still faces mobility struggles, but Mindy says she and her husband are committed to making life as normal as possible for their son.
“Our biggest goal for him is for him to enjoy life,” says Mindy. “He inspires us every day.”