My 11-year-old son Joey suffers from Langerhans Cell Histiocytosis. His white blood cells attacked his hip bone and ate it away causing him to need a hip bone graft and spend several months in a wheel chair. He’s been in and out of the hospital for the last 16 months. This disease could attack again at any time. There is no cure. There is very little funding for researching. You can help us find a cure for Joey and the thousands of other kids this disease affects.
My son is training for Histio Hike Ohio that takes place at the end of September. He plans to do the six mile hike. He must get his leg and hip stronger to be able to participate without pain. He walks, rides his bike and does his physical therapy exercises everyday. He is looking forward to meeting other kids with Histio and being able to talk to them about what he is living with and what he’s been through. This hike has given him something to look forward to and an incentive to work hard and get stronger.
There are two ways you can show Joey your support and help find a cure for his disease.
1. You can sponsor him in the hike by going to this site. We truly appreciate your donation whether it’s $5 or $500.
2. You can buy a Team Super Joey T-shirt (art below). Shirts cost $15. They come in men’s and youth sizes and should not shrink. They are super soft light-weight Ts. Joey’s 14-year-old sister designed the shirts. You can email me your T-shirt order (firstname.lastname@example.org) or put it in a comment on this post. If you know me personally, you can give me the money or anyone can pay via paypal by entering my email address. We will ship T-shirts to those out of the Greater Cincinnati area at no extra charge. Proceeds will be given to Histio research.
T-shirt art – the word “Team” will be above Super on the T-shirts
It would be amazing for Joey to see people in the community, family and friends sporting these T-shirts in support of him.
Please help us find a cure for Joey and all the other kids who suffer from this rare disease (or rarely detected) by making a donation and/or buying a T-shirt. We truly appreciate your support!
Please leave a note here in encouraging Joey in his training for the hike. He loves reading your words of encouragement.
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I have told you before that my son is the best superhero I know. He’s amazing. He deals with chronic pain and knowing that he has this rare and crazy disease (LCH) but still finds a way to smile every day, stay positive and make all of us laugh nonstop. I bet the one thing that would make him happier than anything else in the world is to hear that they found a cure for Histio. We can all help make this happen!
Joey is one of the lucky ones. He had a single bone lesion. That means his cancer-like disease caused his blood cells to attack his hip bone, eating it away. He had a biopsy and bone graft, was treated with steroids, was in a wheel chair a while and went to physical therapy. Boom! He was cured (well sort of – he’s in remission and a lot of pain). He knows the disease can come back at any time and there could be a new lesion but he knows the odds are in his favor that if it even returned, it would be in the bone again. Histio can also attack your skin or organs but luckily Joey is at low risk for this. Kids go through chemotherapy treatments and bone marrow transplants because of this scary disease. Moms and dads lose their children to this disease when it attacks the organs. No one should have to die, have an organ transplant or a fake bone in their body because of this rare (or rarely diagnosed) disease!
Unfortunately, Histio doesn’t get a lot of funding for research. Without research, they can’t find a cause. Without a known cause, they can’t prevent it. Without research, they can’t find a cure. Without a cure, people will continue to live with this scary disease and some lives will be lost. So now you are wondering how you can help, right? I’m going to tell you.
Team Super Joey is going to participate in the Histio Hike Ohio in September. Our team is currently made up of my incredible son Joey, my amazing daughter Andi, the fabulous Nick and me. We have set a goal to raise $1000 for Histio research. You can help us reach that goal. Any donation, whether it’s $1 or $100 will help us reach our goal and help Histio research. Also, if you are interested in participating in the hike and being part of team Super Joey, just leave a comment on the blog and I’ll contact you.
I hope you will consider helping us find a cure for this horrible disease. Joey, Andi and I want you to know how much we appreciate every donation and your constant support.
P.S. if you aren’t following Raising2Tweens on Facebook, you really should be!