Tyler Schell loves swimming, Nintendo Wii, wintertime in Minnesota, Pokemon and just about every subject in school. He admits to being a little short for a 9-year-old, but he's okay with that.
Pretty normal life for a third grader. Besides the regular trips to the hospital and the fact that Tyler has broken more bones in the last five years than most people will in their entire lives.
It all started when Tyler broke his arm after falling off his trike at age 2. Then he broke his elbow at the playground. One time he broke his finger getting books out of his desk at school. Another time he fractured two of his vertebrae while sitting down at a booth at a local restaurant. One recent morning he woke up and had trouble getting out of bed. His parents took him to the hospital and doctors found out he had a thoracic compression fracture.
The breaks (now well over 20) have become a sort of expected routine for Tyler and his parents, Chris and Alison Schell. That's because Tyler is one of about 25,000 to 50,000 Americans living with the genetic disorder known as osteogenesis imperfecta (OI), also known as "brittle bone disease."
The Schell family has spent the last five years learning about the rare condition on a trial-by-fire basis, something Chris and Alison said required a period of acceptance, understanding and adjustment; especially in the beginning.
"There was a short time, before we knew what Tyler's diagnosis was, that social workers got involved because of the type of breaks that he was having," Alison said. "And that's understandable; because how else can you explain those type of breaks if you don't know he has OI?"
The couple, who moved to Woodbury with their young son about 8 years ago from Australia (when Alison was hired to work at 3M headquarters in Maplewood) said they are grateful to have such an energetic and congenial child who has made opportunities out of his adversities. They said they are also grateful for the hospital that has given Tyler better care than they could have ever imagined when they first learned of the severity of his condition.
"When we first started going to the hospital every experience was dramatic," Alison said. "But then you are in the waiting room and there are all these games to play, and everyone - from the nurses, to the doctors, to even the other kids and families at Gillette - are so welcoming, And the care is just excellent."
So excellent in fact, that many of the orthopedic specialists at Gillette know Tyler and his family on a first-name basis.
"I actually love going to the hospital," Tyler said smiling, without any prompting. "You can't go around the corner without running into someone who cares."
Saying thanks on the radio
This weekend the Schell family plans to give back by participating in the annual "KS95 For Kids Radiothon," which raises money for Gillette Children's Specialty Healthcare and the Children's Cancer Research Fund.
Tyler's ongoing experience at the St. Paul-based children's hospital will be one of the featured stories during the 48-hour fundraiser. About six months ago producers for the radiothon interviewed the now Mounds Park Academy third grader about his life with what is termed as a moderate, but serious form of OI and the treatment he receives at Gillette. On Saturday, the radio station will play Tyler's story on the air and then KS95 deejays will interview him live during the broadcast, an experience that Tyler does not shy away from as he has appeared on the radiothon before.
" I like being famous," he joked during an interview on a recent Friday evening at his home in Woodbury.
The snow was falling heavy and he and his mother had just returned from swim practice at the Courage Center in Stillwater. Last year, Tyler won four red ribbons for finishing second at a Courage Center swim meet.
"I would of won first if I didn't have a broken foot," he said with a smile.
Chris and Alison said their son was literally walking across the carpet earlier the morning of the swim meet. He looked a little sheepish after he heard a crack. Dad asked if his foot was okay.
"'It's not too bad,'" he told us," Chris recalled. "When he got out of the pool the last time, he could hardly walk, but he was determined to compete in that race."
Adapting to challenges
The Schell's have learned to adapt their lifestyles to accommodate Tyler's needs. Some of the simple changes. No rugs in the house. Soft carpeting. No outdoor recess at school (he gets to have friends play inside with him), no contact sports and limited outdoor wintertime activities (although Tyler said he loves the snow). A modified bike with multiple wheels to lessen the chances of falling. A hot tub was put inside the house so Tyler can do in-water exercises that help him maintain his bone density.
Trips to Gillette are generally a few times a month.
In addition to visiting the hospital for checkups, x-rays and surgeries, Tyler is there once every four months to receive what is called an intravenous biphosphonate treatment, which doctors say strengthens his bones that have collagen deficiencies. As a result the bones are easier to break. The treatment is part of decade-old clinical trial that Chris Schell said doctors say has increased Tyler's quality of life.
But even with treatment, the breaks will still happen. Tyler knows this.
"That's why we make the most of the good days, and the not-so-good days," he said.
Despite the challenges, Alison said the family is truly fortunate to have Gillette Hospital as a beneficial and positive resource for their child and many others."
"It's really remarkable that we have a hospital like Gillette almost in our backyard," Alison said. "They do so many great things for families."