8-year-old with rare bone disease defies all odds
RIGBY — An 8-year-old girl from Rigby has already gone through more hardship than many adults have faced.
During her life, Hadley Larsen has had 22 surgeries, 113 broken bones and expects to have more of each. She’s currently in a wheelchair to make her life easier.
“It’s called Osteogenesis Imperfecta,” she told EastIdahoNews.com during an interview.
Osteogenesis Imperfecta is commonly called brittle bone disease. The disease damages bones to the point that simple movements can cause big problems.
“(It) means my bones break really easy,” she said.
Her parents Kendra and Eric Larsen gave several examples of her injuries. For instance, Hadley broke her femur by just walking around in her school library. On another occasion, she broke her leg jumping off of a boat into the water.
“It hurts and it’s hard sometimes,” Hadley said.
Brittle bone disease is exceptionally rare. Doctors say approximately one person in 20,000 will develop the condition. Signs and symptoms can range from mild to severe. Brittle bone disease is caused by a defect or flaw in the gene that inhibits the production of collagen, a protein used to create bone. Click here to learn more about OI.
There are four main types of brittle bone disease, according to Shriners Hospitals for Children in Salt Lake City.
- Type I: The most prevalent type of brittle bone disease, Osteogenesis Imperfecta Type I results in mild bone fragility and causes some children to have a smaller stature. It isn’t uncommon for infants with this type of disease to fracture a bone while learning to walk. Many children also experience easy bruising and some degree of hearing loss.
- Type II: This kind of brittle bone disease, triggered by a dominant gene mutation, is one of the most severe. Many newborns with OI Type II have a small chest, soft skull and short limbs, as well as legs that take on frog-like positioning. Respiratory difficulties are also common, making it a life-threatening condition for many.
- Type III: Infants with Osteogenesis Imperfecta Type III are typically born having already experienced fractures in utero. A shorter stature, curved spine, rounded rib cage and other bone conditions are characteristic of Type III.
- Type IV: This moderate type of brittle bone disease is associated with a smaller stature and can be diagnosed early in life or in later childhood. Many children experience frequent fractures beginning in infancy, while they tend to decrease after adolescence.
“I have type 3 and 4 mixed together. So I have my own type. It’s pretty cool. We call it the best type,” Hadley said.
Kendra and Eric say they don’t have a history of brittle bone disease in their family that they could find.
“If she decides to have kids, she has a 50/50 chance of passing it on to her kids,” Kendra said.
Hadley is Kendra and Eric’s third child. They had no idea what Hadley had when they brought her home from the hospital after she was born.
“We could not get her to stop crying. She was fussy, she was upset. So we took her to Eastern Idaho Regional Medical Center (EIRMC). We explained what was going on and having other kids we said, ‘This isn’t normal, we’ve been through this before.’ At that time, they had found that she had four fractures and they were at different stages of healing,” Kendra said.
Thankfully, doctors referred Kendra and Eric to Shriners Hospitals for Children in Salt Lake City. Doctors at Shriners treat children with unique conditions and found that Hadley had brittle bone disease.
“It went from being this great fear to being comforted knowing there were people at Shriners that could help us,” Eric said.
“They were heaven-sent,” Kendra said.
Hadley now has rods inside her body from Shriners that help her deal with her broken bones. Hadley explained that she has five rods in total.
“She has rods on the inside of her femurs and tibias and so they act as an internal splint,” Kendra said.
“Without those rods, she would not be able to walk or stand and she would permanently be in the wheelchair and the fractures without those rods would be much more severe and painful,” Eric said.
Doctor Kristen Carroll at Shriners Hospitals for Children in Salt Lake City has been seeing Hadley for years and has helped her maintain the rods in her body.
“When I see her in clinic, I am assessing how the rods in her bones are keeping her straight or as she grows, are the rods getting too short because they are metal, they are going to stay relatively the same length and her bones are going to continue to grow and do I need to replace something or help her out,” she said.
Dr. Carroll says Osteogenesis Imperfecta is something that Hadley will have to deal with for the rest of her life but knows she will handle it well.
“She has phenomenal grit and ability to go through difficulty to come out even stronger and better,” she said.
Hadley is a living example of just that, defying all the odds with her incredible strength and mobility. It doesn’t keep her from doing the things she loves like swimming, playing drums, dancing and playing games with her siblings.
Even though she has had dozens of bone breaks in her young life, it hasn’t broken her spirit.
Hadley and her family are excited to participate in a virtual fundraiser called Walk for LOVE presented by Big O’Tires for Shriners Hospitals for Children Salt Lake City.
Hadley and her family will be doing the virtual walk in Rigby and would like to invite the community to join them. Normally, the walk is in person but due to COVID-19 restrictions, it will be virtual this year.
“I love my doctors a lot. Other hospitals don’t make you as excited about going to a doctor but at Shriners, they always make you excited for coming and they always welcome you and when I have surgeries, they always give me toys after. I think it’s pretty cool,” Hadley said.
Walk for LOVE is coming up on Sept. 10 from 9 a.m. to 12:00 p.m. According to Shriners website, when you Walk for LOVE, you walk for the kids at Shriners. Every step that is taken and every dollar that is raised shows the world that you support the innovative pediatric specialty care for children with orthopedic conditions, burns, spinal cord injuries, and cleft lip and palates.
“You don’t have to donate very much. You can donate $10 and that’s it and that will help a lot of kids,” Hadley said.
Hadley has a Walk for LOVE team that she’s created. Click here if you’d like to join.