This post is written by Joey Holt.
My mom tells me that I am five in a million. That’s because I have a rare, cancer-like disease called Langerhans Cell
2012 – spent months in a wheelchair
Histiocytosis (www.histio.org) that impacts five in one million. I’m 12-1/2 now but was diagnosed with LCH at age 10 after my white blood cells attacked my hip bone eating it away. I had to get a bone graft, steroid treatment, spend months in a wheelchair, use a walker and crutches and endure 2-1/2 years of physical therapy.
Due to debilitating pain, I have been in and out of the hospital over the last 2-1/2 years and missed a lot of school. Luckily I have awesome teachers and am determined to not fall too far behind. I am in the 7th grade this year.
There is no known cause or cure for Histio. Just like cancer, it can attack the bones, organs or skin again at any time. Many children need transplants or chemotherapy to treat. If it attacks me again, I will undergo chemotherapy. Since it is a rare disease, it does not receive state or federal funding for research. The majority of the money for research comes from the families of Histio patients, the same people who are usually dealing with excessive medical bills.
In spite of everything I have dealt with, I am determined to participate in the Histio Hike Ohio this September in honor of Histio Awareness Month but I need to raise funds and awareness.
Histio Hike Ohio 2013 – Histio Warriors and their siblings
I am asking you to help one of two ways.
- Buy a 2014 #TeamSuperJoey T-shirt (pictured below) for $15. You can pay via paypal (gina5620@gmail.com) or by
cash or check. Payment not due until shirt arrives. Be sure to sport your shirt around to raise awareness.
- Sponsor me in the Histio Hike Ohio, which takes place September 26-28. Visit http://ohio.histiohike.org/teamsuperjoey. Whether it’s a $5 donation or a $500 donation, it will help.
Please email questions to my mom Gina (Holt) Stegner at gina5620@gmail.com. Money raised will be donated to Histio research in hopes to find a cure for me and others who have Histio.
Princess Sophia – 4-1/2-years-old, has HLH and lives at the Ronald McDonald House, thousands of miles from home for treatment.
Super Joey
Sincerely,
Joey Holt 🙂
Please help us find a cure.
Write across the river 