Team Super Joey in the Media

cyclones3My amazing son Joey has been in the media a lot lately so I want to have one spot where you can find links to his stories. This will be the spot. I will update this post as needed.

Joey’s goal is to raise awareness for Histio, and hopefully someday find a cure for his disease.

Histio Survivor Prepares for Fundraising Event, Community Press, July 12, 2013
Enjoying the Little Things and Making Memories, Looking4ward2tomorrow, Nov. 15, 2013

Fort Thomas Boy Fights Rare Disease With a Strong Voice – WCPO Digital, Feb., 2014

Teen is Survivor of Bone-Destroying Disease – Community Press, Feb. 25, 2014
Histio Awareness Video – Produced by Cathy Ross, Starring Joey Holt, Requested by Histio Association, 2014
Rare Disease Day Proclamation, Fort Thomas Matters, Feb., 18 2014
Team Super Joey Fights Histio, Rare Disease Day, Feb., 2014
Joey Advocates for Histio & Rare Disease Day, Fox 19 Morning News, Feb. 28, 2014
Joey is Five in a Million, Cincinnati Childrens Hospital Blog, Feb. 28, 2014
Follow Team Super Joey on Twitter @gina5620 #teamsuperjoey
Follow Team Super Joey on Facebook at Raising2tweens
Thanks to everyone who has shown their support!
cyclones2 cayton family cyclones rare disease hope waiting for trainTeam Super Joey
My Histio Family

joey super herosuper joeyHistio Warriors and siblingsmy histio hike 2


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: 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.

My Son Has a Rare Disease

histio ribbonMy son has a rare disease. Ten months ago we were told about LCH (Histio), something we had never heard of. I have spent the last ten months sharing our story through Facebook, my blog and the media. I want people to understand what LCH is and provide the support to those who don’t have family and friends nearby.

During this time, I have made friends with other Histio parents. I have watched friends lose their children to multi organ LCH and HLH. It has been heartbreaking to say the least. I have watched others fight and win their battle with Histio. That has been fantastic! My son has won his battle… for now. Yes, it can come back at any time but we are determined to beat this.

Today is National Rare Disease Day. It’s a day to try to make people more aware of rare diseases. Ironically enough, I received a call from a mother this morning who is concerned about her son. I don’t know this mother but we have mutual friends who connected us. Her son’s story sounds similar to Joey’s prior to being diagnosed. I don’t know if her child has Histio but I know she needs answers.

The fear, the concern, the unknown, the helplessness sounded all too familiar. I held back tears while talking to her; not because I was worried he had LCH but because I know what it’s like to be a parent and be that scared. I reassured her that even if it was single bone lesion LCH that it would be okay. She’d have a hard road ahead of her but her child would be okay in the long run. I told her that she was in the best part of the world – Cincinnati area – to be if her child did have this because the experts are at Cincinnati Children’s Medical Center.  I explained that I would be here for her every step of the way. But I knew that none of that really mattered. She needs answers.childrens hospital

I emailed the amazing doctors who have treated my son and told them about this little boy. They called the mother within minutes and moved things around so he could be seen today. The nurses and doctors understood that this mother has to have answers or it’s going to impact her own health. I am anxiously awaiting a call or email from her.

Another irony of the day is this article that was released about LCH today. It looks like they have had some breakthroughs regarding treatment. That is super exciting!

I know it sounds crazy to say this; I feel like my family has been very lucky through all this. Yes, I would have liked answers sooner, of course it would be better if my son never dealt with this, I wish he never spent a summer in a wheel chair and missed two months of school, it makes me crazy that my son worries all the time that it’s coming back but still, we are lucky. I had the courage to advocate for my child. I had friends and family to support me and answer my late night calls. I had Children’s Hospital 15 minutes from my house. I didn’t have to pay to stay at the Ronald McDonald House and I had my network all around me. My son will have tests for a long time to come but I know we can get through this. As Robin on Good Morning America said the other day “You don’t know what strength is until strength is the only choice you have.”

joey joshIn honor of Rare Disease Day, and my son, I am asking you to please share this post with a friend(s). Awareness is everything!

When have you been forced to discover how strong you truly are? We love reading your comments!