ANDERSON, Ind. —
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.