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.