September is Histio and Childhood Cancer Awareness Month. These two illnesses are very similar – they both can attack skin, bone and organs, both can require organ transplants, BMT, surgery, long hospital stays and surgery, both have survivors and angels. But you may have never heard of Histiocytosis. Getting a diagnosis before it’s too late is often difficult.
Twelve-year-old Joey from Fort Thomas was diagnosed at age 10 with Langerhans Cell Histiocytosis. It ate his hip bone away causing him to need a graft, spend months in a wheel chair, live with chronic debilitating pain that keeps him out of school for weeks at a time, take steroids and require physical therapy for the last two years. His friend Sophia from New York is 4 and lives at the Ronald McDonald House in Cincinnati because she has Hemophagocyticlymphohistiocytosis and needs daily treatment. Eighteen-year-old Ian, from Anderson, suffers from LCH in his pituitary gland. Emily and Evan of Columbus miss their little sister who passed away from LCH just after her first birthday. It took so long to be diagnosed that by the time she was, it was too late.
These kids have met each other through fundraisers and hospital visits. They are determined to raise awareness and funds for research for Histio. Last month they hosted a bake sale in Fort Thomas. On Sunday, Sept. 14 from 1 – 4 p.m. they will host a dog wash. Some of the kids and their families are participating in the Histio Hike Ohio Sept. 26 at Shawnee State Park (ohio.histiohike.org/teamsuperjoey). It raises money and awareness but also brings together the families dealing with this disease. Visit www.histio.org for more information.