ANDERSON, Ind. — Imagine being 5 years old and having over 100 broken bones in your lifespan.
That’s a reality Tulson Crandall and his mother, Danielle, have to live with daily. Tulson has a rare form of bone disease known as osteogenesis imperfecta (OI) or brittle bone disease. It’s a disease that affects the strength of bones in people and affects people differently.
The Crandalls were at Anderson’s Holiday Inn Express on Saturday to meet with several other OI families from around the Midwest.
Crandall said when Tulson was a baby they couldn’t dress him and had to carry him around on a pillow to try and keep him safe.
“Just burping or dressing him would break ribs or arms,” Crandall said. “He was very fragile for a long time.”
Tulson is a little tougher now and was having a good time riding around on a tricycle and playing with other children his age dealing with the same disease. Crandall was letting him play but still keeping a watchful eye.
“We just have to be really careful with handling him,” Crandall said. “He’s 5, so he wants to jump off the couches and be like his siblings, so we have to be careful of that.”
She said it was nice having a day to come hang out with other families dealing with the same issues. She said it was good for her son to meet and play with children like him.
The day was being directed by Michelle Hoppes, the Indiana support group leader for the Osteogenesis Imperfecta Foundation. Hoppes’ 12-year-old daughter Kayte has osteogenesis imperfecta, which led Hoppes to the foundation. She said raising Kayte has been a challenge because she wants to protect her but also wants her to have as normal a life as possible.
Kayte goes to school and wants to have the independence most of her friends enjoy. Hoppes said that this past week Kayte went snow tubing with a group from her school, despite the possibility of breaking more bones.
Kayte said the reality of a broken bone is something she's willing to deal with in order to do things her friends do.
Brittle bone disease comes in all different forms. Dr. Neel Desai, a physician whose son has OI, said it's a disease of variance like asthma. Some people can have it very bad, some people are diagnosed with it but don't show signs very often.
Hoppes said some of the children at the gathering Saturday were in electronic wheelchairs and will remain that way for the rest of their lives. Their leg bones are just not strong enough to support their own weight. Some, like Tulson, have had hundreds of breaks in their lifetimes.
Other cases aren't quite as severe. Kayte occasionally uses a wheelchair at school to give her legs a rest but can manage without one. Hoppes said some are diagnosed with the disease but only have a couple of breaks a year.
The disease also stunts the growth of some and can affect the life expectancy.
Ten to 15 years ago, Hoppes said, the life expectancy for someone with brittle bones was only about 30 years. Now, thank to advances in medicine and treatment, that number has risen to about 55 years.
"I fully expect by the time Kayte is about 30 the life expectancy will be about the same as anyone else," Hoppes said.
Besides meeting with other families from around the Midwest, the Saturday get-together was also a precursor to Wishbone Day, a national awareness day for OI in May. Hoppes said the meeting was an opportunity to hear what the group planned to do and get the Wishbone Day T-shirts.
Follow Zach Osowski on Twitter @Osowski_THB, or call 640-4847.