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.

One Year Of Histio; Overcoming the Challenge

Joey, Andi and I stop to enjoy Stone Mountain

Joey, Andi and I stop to enjoy Stone Mountain

The last few weeks have been very emotional – happy, sad, reflective – for my family. It was this time last year that we were trying to find out what was wrong with Joey. He was in extreme pain and we were not getting answers. He went from having pain similar to a pulled muscle to not being able to get out of bed within a few weeks. It all started sometime in March but it wasn’t until the end of April that we were told he had Langerhans cell histiocytosis (LCH). Prior to diagnosis, I already had Joey using crutches to get around and the elevator at school because it was obvious that something was seriously wrong.

I remember trying to take him on adventures over spring break. He would try to go on short hikes with us but would end up in too much pain to continue. Last Easter he had tears as he tried to hunt for eggs with his cousins. He could barely maneuver through grandma’s yard. He stopped riding his bike and walking to the park or local candy store with his friends. He would come straight home from school and just lay in his bed or on the couch for the rest of the day. This went on for weeks. I was so frustrated. The initial tests didn’t show anything and the doctors weren’t really pushing for answers. “Growing pains” is what they kept telling us. My response “growing     pains don’t make you fall to the ground when you try to get out of bed!”

Joey using a walker after three months in a wheelchair

Joey using a walker after three months in a wheelchair

Once he was diagnosed at Cincinnati Children’s Hospital, things moved quickly. We were given the news on a Monday and he had a biopsy and bone graph of his hip on a Wednesday. We would never know our old “normal” again. Joey spent several months in a wheel chair and couldn’t finish the last two months of school. Then he moved to a walker, crutches and then finally on his own.So we have just past the time when all the pain started one year ago and we are quickly approaching the one-year anniversary of his surgery. There hasn’t been a day that has gone by in the last year that Andi, Joey or I haven’t thought of Histio and the way it has impacted our lives. But it’s been more evident in the last few weeks, especially as we celebrated Easter and explored Atlanta on Spring Break.

Joey and Holland goofing around

Joey and Holland goofing around

Joey ran through my parents’ yard collecting his eggs. He had no issues getting up and down the hill. In Atlanta, he hiked down Stone Mountain and played on all the rocks. He then did an obstacle course and rock climbed. I sat on the mountain for a while watching him goof around with his sister and friends. They posed pictures acting like they were falling off the cliff and jumped from one rock to the next. I felt tears build up in my eyes and eventually run down my face. Could this possibly be the same kid who couldn’t walk up the street, was in a wheelchair less than a year ago, who needed a stair lift to get out of the house and couldn’t get out of bed on his own? Is this really the child who has a rare cancer-like disease and was told only a year ago that he might not be able to walk again? Could this be the boy who has a “fake” hip?You know, although it was definitely Joey climbing all over that mountain, it wasn’t the same boy from a year ago. That boy, that sick little boy whose world had been turned upside down in an instant, that boy who was sad and helpless, that boy was gone. The boy I watched climb the mountain was a brave, healthy boy who overcame a major challenge that was thrown his way a year ago.

My family will never know our old “normal” again but we have definitely found our new normal together and we will continue to do so as new challenges are thrown our way.

Since the one-year anniversary is coming up, Joey will have new scans, blood work and tests next week. This is a proactive measure since we don’t want the Histio to sneak back up on us. I don’t think that will be an issue though. I think Joey, his sister Andi and I will be celebrating Joey’s clean bill of health next Thursday night!

The kids and I would love to read your thoughts about all of this and hopefully some encouraging words here in the comments.