As my regular readers know, my son has a rare disease called Langerhans Cell Histiocytosis. His white blood cells attacked hip bone eating it away causing him to need a bone graft and spend four months in a wheel chair. I have told Joey’s story for him hundreds of times through the blog, newspapers, doctors, etc… But Joey is ready to tell his own story.
In honor of International Rare Disease Day, Feb. 28, Joey has planned three ways to spread awareness for his disease. And he wanted to be the one to do it.
1. In November, I wrote a post based on a conversation my son and I had called “I just don’t understand why my disease isn’t important.” This post got a lot of attention in the online world. The Histiocytosis Association read it and asked if Joey would be willing to tell his story on camera. He has been wanting to be an advocate for his disease so he was excited. So with the help of a dear friend, he created this video: http://youtu.be/Vpq3BIYlGQ0. Please take two minutes to watch 12-year-old Joey Holt tell his own story.
2. In early January Joey decided to write a letter to the mayor of Fort Thomas, the city we live in. He asked her to make a proclamation making Feb. 28, International Rare Disease Day, Histiocytosis Day in honor of Joseph Holt in the City of Fort Thomas. The mayor agreed and the proclamation will made at the Feb. 18 council meeting. He plans to be there to answer any questions anyone might have.
3. Joey asked me to send a news release about International Rare Disease Day and his disease to the local media. He hopes to get interviews with print and online media and on TV. He wants to teach as many people as possible about rare diseases and Histio. At his young age he realizes that people will respond more to hearing the story straight from the child who has been impacted by this cancer-like disease than from his mother, doctors and other experts. He already has an interview setup with an online publication and he is hoping more will be arranged.
These are three fairly simple ways anyone can make a difference and advocate for International Rare Disease Day. So consider doing something like this where you live. You can also help spread awareness by sharing this post and showing the video Joey made. Awareness is the key to a cure. Please be part of the cure.
P.S. Be sure to like us on Facebook! And if you Tweet about us, use #teamsuperjoey and @gina5620.
Spread the word…share this post! It may help bring awareness. Every voice counts!!
I love that he is ready to share it himself. I sure hope that people start listening!
This is such important information to share. My mother had MS so she was lucky that it was well known.
Truly amazing your son is willing to get out and share his story. Way to go momma for spreading the word!
Thank you for sharing your life and son with us. You both are so amazing and strong. Diseases are challenging enough, rare diseases must be, well I can’t even imagine. We should share “Rare Disease Day” to help bring awareness. I’m doing so now 🙂
I just watched your son’s video. He seems to be a brave, little man! Stay strong, Joey and keep on fighting!
I am praying for you Joey. I am going to learn as much about your disease as I can.
Thank you Rose.