4-H'er perseveres despite rare disease

Jenessa Levanen carefully made her way around the show arena at the Northwest Montana Fair on Tuesday, stepping along with the aid of a bright blue walker and her lamb Nutella in tow. She wasn’t worried about the other 4-H’ers or even their sheep — it was the sawdust floor that she had her eye on. One errant bump could send her crashing to the ground and in Jenessa’s case, even simple falls were serious business.

Impacts that might leave other kids with bumps and bruises would mean a broken femur for the West Valley 13-year-old.

To date, she’s broken 98 bones.

The most recent fracture occurred on Jenessa’s last day of school when a co-ed accidentally stepped on her shoelace.

The fall was enough to snap her femur.

Jenessa’s brittle bones are caused by a genetic disease called osteogenesis imperfecta, which affects as many as 50,000 people in the U.S. The condition results from a lack of or poor quality of type 1 collagen — a key protein that creates the framework bones are formed around. In more moderate incidents, a patient may have just a few fractures during their lifetime, while more severe cases can result in several hundred fractures, according to the Osteogenesis Imperfecta Foundation.

“It’s hard to watch her go through all the pain,” said her mother, Karrie.

But the pain isn’t just physical.

“A lot of my friends go out to do stuff that I can’t do, like ice skating,” Jenessa said.

“Kids don’t think — they’re off running and playing and they don’t think to look back and see that she can’t keep up with them,” Karrie added.

But 4-H is different.

Jenessa, with a few helping hands, is able to participate in the club, just like any other student.

“She’s as involved as she can be with her disability,” said Kristi Davis, the organizational leader for the B&F Livestock 4-H Club. “Her sisters help her a lot, but she’s out there doing as much as she can when she can.”

Nutella is the second lamb Jenessa has raised and she said participating in the program has opened up doors for her.

“I get to do things that I never thought I could do, like showing a lamb at the fair,” Jenessa said.

Jenessa was inspired by her sister who started raising lambs three years prior.

“I thought it was pretty cool and I wanted to try it out,” she said. “When I first get them, they’re kind of wild and not used to me and my condition. My sisters help me calm them down.”

She also spends extra time with her animal and focuses on training Nutella not to jump.

When Jenessa enters the arena, she is permitted to halter her lamb and get assistance positioning the animal from another ag student, which in Tuesday’s case was Krystal Sutton of Kalispell.

She’s never had a break during the fair, but her mom comes prepared with a break box — a container with ACE bandages, liquid Valium and other medical supplies that goes wherever Jenessa goes.

After watching her daughter navigate a childhood and infancy marred by pain and immobility, Karrie doesn’t take any chances.

Jenessa entered the world with a broken right femur and suffered a second femur fracture three weeks later.

By the time Jenessa was six week old, she’d broken eight bones.

Their doctor reached out to a geneticist who diagnosed Jenessa with osteogenesis imperfecta at 2 months old. For the mother of 10, it came as a shock.

“It took about four months for me to wrap my brain around it, to accept,” Karrie said. “It was hard. It was very hard. Every time you moved her, she’d just be breaking a bone and it just didn’t make sense to me.”

When Jenessa was three, she had her first rodding surgery, where doctors installed metal rods down the center of her tibias and femurs to provide stabilization. Jenessa had telescoping rods, which grew as Jenessa did, but that didn’t stop her from breaking them around the time she turned 10, calling for yet another surgery.

“Since I’ve had so many, I’ve kind of gotten used to it,” Jenessa said of her surgeries.

After surgery or a break, Jenessa’s healing process differs from traditional routes. Instead of plaster casts, which are heavy enough to cause further fractures, she uses back slab splints, which are plaster pieces on the back of the limb and an ACE bandage wrapped around the top. After three weeks of immobilization, Jenessa begins aqua therapy, working her way up to bearing weight on the injured limb, first in water and then on land.

During healing periods, Jenessa says she keeps busy with puzzles, computer games and LEGOs.

“Challenging my brain is one of my favorite things,” she said.

Her mother is also working to help her daughter become more independent. Last July, she applied for a service dog for Jenessa through Canine Companions for Independence — an organization that provides highly-trained assistance dogs to disabled individuals at no cost. Jenessa is qualified to receive a dog, but remains on a waiting list that may run up to two years. Once she does receive her canine, she’ll be able to spend time alone at home without worrying about potential falls. If she does have a break, the dog will be able to fetch a phone and Jenessa’s medical bag, along with providing comfort while she waits for help to arrive.

Until then, Karrie remains focused on giving her daughter as normal of a life as possible.

“We couldn’t just keep her in bubble wrap — we had to let her live as normal of a life as possible and just take the breaks as they come,” Karrie said.

Reporter Mackenzie Reiss may be reached at 758-4433 or mreiss@dailyinterlake.com.