Speaking Out for International Rare Disease Day


cyclones3As 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.

rare disease fact

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.

rare diseaserare disease 2These 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.

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10 thoughts on “Speaking Out for International Rare Disease Day

  1. 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 🙂

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