Despite being diagnosed with Legg-Calvé-Perthes disease in December, 10-year-old Greenacres resident Timmy DesChamps got right to work to help others dealing with the disease he lives with every day.
Perthes disease is a rare childhood condition that affects the hip and occurs when the blood supply to the rounded head of the femur, or thigh bone, is temporarily disrupted. His mother, Jen DesChamps, said the condition affects four to five kids per 100,000, usually under the age of 10.
“Unfortunately, not much is known about what causes the disease or which treatment options are the best,” she said. “There are a few studies going on now to help figure that all out.”
After being diagnosed in December, Timmy had surgery in February. He’s been on crutches since his diagnosis.
The hip usually heals over time, but the kids who are diagnosed with Perthes are left with chronic pain and require hip replacements at early ages.
To raise money and awareness for the Perthes Kids Foundation, Timmy set up a lemonade stand May 16, where more than $500 was raised, and planned another for June 9 from 10 a.m. to 2 p.m. with a rain date of June 23.
It can be tough to be a kid living with Perthes — those who have the disease can’t run, jump and climb as much as their classmates — but Timmy took it in stride.
“I didn’t want to just sit and do nothing,” he said. “I want to raise money for it.”
The money he’s raising will benefit the PKF foundation, which runs Camp Perthes USA in Irvine, California, every July for kids diagnosed with Legg-Calvé-Perthes disease.
“We help build confidence and encourage our kids to always just be themselves,” according to pertheskids.org. “Camp also provides a unique opportunity for parents to meet up, bond and share stories with each other while their kid is at camp.”
Timmy’s mother said donations enable kids affected with the disease to attend the camp for free with their families.
“It’s a rare disease,” she said. “And there are a lot of expenses associated with it, so some families can’t afford certain things. The foundation helps to support these families.”
Although Timmy and his friends aren’t yet teenagers, they’ve shown maturity in the face of Perthes.
“My friends are really supportive,” Timmy said.
They hang out with him during recess because he can’t run and jump, and they all wore T-shirts Timmy produced after his first fundraising effort.
Using a website that allowed free design, Timmy and his family created T-shirts and sold them for two weeks. In the two weeks alone, Timmy managed to raise more than $4,000.
Timmy hasn’t yet met other kids in person who also deal with Perthes disease, but he and his family did reach out digitally to other families.
And Timmy’s family has his back.
“There’s been a lot we’ve gone through to figure out what the best treatment plans are because it’s still something for which there isn’t a standard level of care,” Jen DesChamps said. “So, there’s a lot of questions about what’s right. That was a big part of the decision in February when [Timmy] had surgery.”
There have been some challenges along the way.
“It’s a disease where everyone looks OK, but they’re not allowed to run, they’re not allowed to jump and when kids are young, that’s a very difficult limitation,” she said. “You don’t realize how difficult that is and how it can affect your family.”
Despite the challenges, Timmy has managed to keep his head high.
“We’re very proud of him,” his mother said. “He’s got great courage and strength, and he’s never complained or made it about him.”
His father, Tom, said Timmy has shown a great deal of courage and strength.
“Perhaps more impressive, he has taken his adversity and turned it into something positive,” he said. “Through initiatives entirely his own doing he has raised both awareness and much needed funding to benefit patients currently battling this rare disease and to further the scientific understanding of Perthes. I couldn’t be more proud of my son.”