GJ mother creating organization for children affected by leg impairment
When Kira Hudson of Grand Junction learned her son Ben had a rare disease that would making walking difficult for him, she sought support from the Internet.
“I just wanted to find one family that knew how I felt,” Hudson said.
But the Internet provided little information about Blount’s disease and even less support from other families.
Blount’s disease is a failure of the tibia bone, just below the knee, to grow normally. It causes children and adolescents to have difficulty walking. Most cases are treated with a combination of leg braces, physical therapy and surgery.
Although rare, an estimated 200,000 people are living with the disease worldwide, many in Africa, the West Indies and Finland.
Ben, now 2 1/2, began showing signs of the disease in 2010 when his legs began to appear bowed.
Hudson took him to several doctors who said he was simply bowlegged, which is common in toddlers, and it was something he would grow out of.
However, within just a few months Ben’s toes were turned inward to the point that walking was nearly impossible.
After finding a doctor who diagnosed the disease, Ben was immediately fitted for leg braces and started physical therapy.
Blount’s disease is most common in children who are obese, female and African-American, and in babies who walk earlier than age 1.
Ben doesn’t have any of these risk factors, so the disease was classified as idiopathic, meaning the precise cause of is unknown. That information only added to Hudson’s frustration.
Ben had been nicknamed “the football player” by his family and “it had upset me because this changed his path. I kept thinking ‘What would he have been if he didn’t have this?’ ” Hudson said.
“I worried about him being defined by this disease. I didn’t know if I was doing all I could in his treatment,” she said.
Unable to connect with other families affected by the disease, she began blogging about Ben’s experiences at http://www.benhasblounts.blogspot.com.
“At first I was just really angry and needed somewhere to vent,” Hudson said.
Then her blog began attracting the attention of families worldwide with children diagnosed with Blount’s disease.
First, it was a family from Australia, then another from Michigan. Then one night she had a Internet chat conversation with three other mothers with children who have Blount’s disease.
Now that she’s connected with a few families, Hudson wants to expand by starting a nonprofit organization that would help parents network, share and gain information.
The organization also would provide an equipment exchange for leg braces as children outgrow their old ones and information about doctors and physical therapists. “It would be a place where if you go there you can find help,” Hudson said.
She has applied for nonprofit status and now needs volunteers and several people to serve as a board of directors.
“Even after Ben is better — I can see myself doing this for the rest of my life,” she said.
Hudson added a “donate” button to her blog for people who want to help with funding for establishing the organization. She also plans to host a number of raffles, giveaways and other events through her blog to raise money for kids living with Blount’s disease.
To learn more, go to http://www.benhasblounts.blogspot.com.
Ben Has Blounts can also be found on Facebook, YouTube and Twitter.