Joey Holt of Fort Thomas organized a lemonade stand to raise money and awareness for rare diseases and childhood cancer at this year's July 4th Parade in Fort Thomas/FTM file |
September is Histio
and Childhood Cancer Awareness Month, and a Fort Thomas youngster is taking action to raise awareness and funds to combat the rare childhood diseases.
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. Honestly, the only difference is, you have never heard of Histiocytosis. It also doesn’t receive government funding.
Doctors argue whether
or not it is a cancer but it is definitely treated as one. However, not many
doctors or parents have ever even heard of this disease so getting a diagnosis
before it's too late is often difficult.
Twelve-year-old Joey
Holt of 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 which 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 Lopez from New York is 4 and lives at the Ronald
McDonald House in Cincinnati because she has Hemophagocyticlymphohistiocyto sis
and needs daily treatment. She has had a BMT, chemo and many other treatments.
Ian Anderson, 18 of Anderson, suffers from LCH in his pituitary gland. He is
undergoing chemo and has dealt with many side effects of the disease.
Emily and
Evan Marshall 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
managed to meet each other through fundraisers and hospital visits (if you have
this disease you want to be in Cincinnati or Texas). They are determined to
raise awareness and funds for research for Histio. Last month they hosted a
bake sale in Fort Thomas.
Upcoming events include:
Upcoming events include:
On Sunday, Sept. 14 from 1-4 they will host a dog
wash at Dirty Hairy's Dog Spa at 18 N. Fort Thomas Ave.
Some of the kids and their families are participating in the Histio Hike Ohio Sept. 26-26 at Shawnee State Park, not only to raise money and awareness, but also to bring together the families dealing with this horrible disease. Holt says he loves the hike because he actually feels normal there.
Some of the kids and their families are participating in the Histio Hike Ohio Sept. 26-26 at Shawnee State Park, not only to raise money and awareness, but also to bring together the families dealing with this horrible disease. Holt says he loves the hike because he actually feels normal there.
The kids also got
together this past weekend to make this video in hopes they will raise
awareness and funds for research:
Please help these kids
raise awareness for Histio in hopes of someday finding a cure. Visit www.histio.org for more information.
- Press release
- Press release
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