Amber Harris felt lost seeking help for her son Gavin, who, at the age of 7, suddenly began experiencing pain in his hips and could no longer sit down, let alone run, jump and play.
Harris took Gavin to a physician in their small hometown of Paris, Tennessee, but help was hard to come by.
The physician sent them to a specialist who was able to correctly diagnose Gavin with Perthes disease, which affects 1 in 21,000 children ages 3-12 and can last a lifetime. Perthes disrupts blood flow to the hips, causing the femur to deteriorate. Most affected by Perthes are in casts, using crutches or confined to wheelchairs.
Perthes is so rare that the small-town specialist had a bleak suggestion for Harris and her son.
“He literally handed me a paper and told me to Google it,” Harris said.
For eight months Harris searched for answers and support she couldn’t find. There were days she allowed self-loathing to consume her, wondering what it was she did as a mother to allow this to happen. Soon, she received an answer to her prayers in the Santa Monica based and founded Perthes Kids Foundation.
Longtime Santa Monican and winner of the Survivor TV show, Earl Cole, created the Perthes Kids Foundation after growing up with Perthes disease himself.
He established the Perthes Kids Foundation in 2007 with his Survivor winnings in conjunction with his alma mater, the University of Kansas. The foundation raises awareness of the disease, funds, furthers research, and most importantly, connects others dealing with the rare hip bone disease via worldwide camps.
“Growing up with [Perthes], I felt very alone,” Cole said. “I never met anyone in my entire life with this disease until I was an adult. With the foundation, I wanted to bring people with Perthes together. Parents, kids, anyone. Bring them to one location where they don’t have to explain themselves.”
Camps consist of 35-50 kids ages 7-13, supported by parents, volunteers and medical staff. Camps have grown from being in California to Florida and now, internationally. The camp helps kids feel gain confidence, tailoring activities to their abilities and seeing others affected by Perthes as they are.
“It's fun and they have their own pride,” Cole said “Like Survivor. Their own Perthes tribe.”
It also helps parents find comfort.
Harris found the foundation eight months after her son’s initial diagnosis. She contacted them and eventually took her son to several of their camps, a couple in Florida and even some in California. She says she’ll take her son to camps to the program until he ages out and maybe begins to volunteer himself.
Harris works two jobs to support her son and his medical procedures -- who’s now 11 and has had several surgeries and projected to have a full hip replacement at the age of 14 -- she’s thankful she came across the foundation.
“It was all literally life-saving,” Harris said. “I had my breath of fresh air. I thought, I now have a network of moms and dads and families. I can cry and cry and my son can have a bad day, but that's okay. Because of this foundation, we can connect with other families. We've traveled this road. We see life in a brighter light.”
For more information on Perthes and the Perthes Kids Foundation, visit http://www.pertheskids.org
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