15-year-old Hannah Jordan has found a passion-and healing-through cycling.
Hannah Jordan was born small, but that would prove no indication of what her life would become.
In her first days, Hannah became no stranger to medical attention. Struggling with feeding and gaining weight, it seemed that Hannah would always be small. By the time she was 2 years old, Hannah was diagnosed with Russell Silver Syndrome – a rare form of dwarfism — and began growth hormone. Initially, doctors anticipated that she’d never stand much taller than 4 feet. Today, she’s proved them wrong, standing at 5 feet ¾ inch.
But inhibited growth wasn’t the only trial Hannah faced. After 2,500 injections, her parents decided to stop the growth hormone earlier than planned. Hannah was sick and, while growing felt important, it was also consuming too much energy. The priority was for Hannah to get better.
With a highly skilled team of doctors from Mt. Sinai and the Cleveland Clinic, Hannah’s family embarked on a journey over which they had little control. At age 6, Hannah was diagnosed with another rare metabolic defect. Spilling ketones at high levels, her body was essentially cannibalizing itself. Hannah underwent a surgery and walked away with a Gastrostomy Tube (G-Tube). This tube has fed Hannah 24 hours a day, every day, since she was 6 years old. At night, she hooks up to an IV. During the day, she packs it all in her backpack. Still, she supplements her diet – ideally consuming around 3,800 calories per day.
But her body continued to burn too much. Eating it’s own muscle and tissue to stay alive, Hannah’s body required much rest. At her weakest, she slept for 20 hours a day. It was then that her doctors in New York recommended her to the Make-A-Wish Foundation – an organization that grants the wishes of children with life-threatening conditions.
At 9 years old, Hannah and her family packed their bags and headed to Disney World. They took in four parks in five days, met all of the Disney characters, ate ice cream for breakfast, played with Shamu, and skipped all the lines. And while Hannah was still sleeping 20 hours per day and may not remember every detail, she remembers the feeling that it brought her.
“My trip brought a lot of joy to a really dark spot in my life,” Hannah said.
Aside from joy, the trip brought a renewed sense of determination to the Jordan family.
“The trip came at a sad time,” said Alicia Jordan, Hannah’s mother. “But we were stubborn. When the doctor recommended her, I was taken aback. It was shocking to realize that we were at the place where [Hannah] had enough stuff going on that someone would recommend this. But we were determined to just keep fighting.”
And they did. After the Make-A-Wish trip, the Jordan family returned and learned that Hannah suffered from a Clinical Mitochondrial Disease. The disease is passed through the mother’s bloodline and also affected her brother, Braxton. After this diagnosis, a doctor at the Cleveland Clinic recommended a patch that would hopefully help Hannah stay awake more during the day. The patch seemed to work, keeping her up whenever she wore it, and Hannah began to yearn to be involved in competitive activities like other kids.
She started, in her medical stroller, with a softball team, and they quickly saw improvement. Between the patch and regular activity, Hannah worked her way off of the almost 30 medicines she took each day after just six months. Softball, however, wouldn’t become her passion. Cycling would.
“I like that anyone can do it,” Hannah said. “When I was growing up, there wasn’t any sport I could do. I’ve always been naturally competitive, and I liked that you could start this at any age.”
Hannah rode a bike one time when she was 9 years old. After that, she didn’t touch the bike again until she was 13 years old. Then, within 10 days of learning to ride, she rode 210 miles collectively. Two months later, she rode her first 100k and raced her first crit. Five months after that, she finished her first century in under six hours. The following month, she beat the train at Race the Rail – maintaining a speed of over 21 mph for 32 miles. She’s sponsored by Colnago, HED Wheels, and Oakley. Just recently, she’s joined the Tulsa Wheelmen as their newest (and youngest) teammate at age 15.
She’s done all of this with diagnosed low muscle tone, her G-Tube, and through a few health episodes. But it’s not only her story that sets Hannah apart.
“Her doctors have said that she’s essentially redefined her genetic code,” Alicia explained. “She’s not the same kid she was.”
She’s feisty and, while her mom thinks that it may be something new that has become her personality since she started cycling, she also thinks it’s been a part of her all along. This feistiness is what carried her through her sickness, and now has made her a fierce cycling competitor. Her mental toughness is unparalleled, always convinced that she can give 40 percent more than her best – an idea inspired by the Navy Seals’ training.
“I couldn’t control being sick,” Hannah said, “but I could control how I did with this. The power is in my hands. Unless I can’t breathe for another second, I can keep going.”
Looking back, Hannah says she wouldn’t change her story for anything. It’s that story that has built up this mental toughness. That story that has made her into who she is today. When she thinks about when she was sick, she knows it worked out because she was meant to do something special.
“I used to be so frustrated because I didn’t know what I was passionate about,” Hannah said. “My only passion was staying alive. Some people take advantage of just how hard staying alive is.”
Now, with cycling as a passion, Hannah has set her sights on turning pro. She’s just points away from moving up to being a Cat III rider and is set to be a junior counselor at the Olympic training camp this summer. Her big dream? To pack her bags, and her G-Tube and head to the summer Olympics where she’ll ride for Team USA.
“Much of what we’ve been through has made us realize just how fragile life is,” Alicia said. “We’re one bad bike wreck away from it all being over. But we’re going out in a blaze of glory and taking no prisoners in this life.”
Make-A-Wish Oklahoma (MAWO) is celebrating 35 years of granting wishes to Oklahoma children who are facing life-threatening conditions. Through August 31, every new dollar raised by MAWO will be matched by Make-A-Wish America to fund the wishes of Oklahoma children.
For ways to help, go to Oklahoma.wish.org