Joey is Five in a Million: Rare Disease Day 2014

Rare Disease Day

My 12-year-old son Joey is five in a million. He is an A/B student, member of the chess club, on the Odyssey of the Minds team, loves to hang out with his friends and is hilarious. But that’s not what makes him five in a million. Joey has Langerhans Cell Histiocytosis, a rare cancer-like disease that causes his white blood cells to attack his body. The disease attacked his hip bone, eating it away and causing him to need a bone graft at 10-years-old. He spent four months in a wheelchair, time using a walker, then crutches, followed up by a year of physical therapy. Although there was question as to whether or not he would walk again, he can run, play and do most “normal” kid things now.

But “normal” is a funny word when you have a rare disease. Our lives will never be the same “normal” we once knew. Just like cancer, we worry the Histio will attack Joey’s body again. It could attack his bones, skin or organs. Although Joey is not at high risk for this, Histio can kill. If it attacks again, he will need chemotherapy. He’s in what doctors consider remission right now but he has scans regularly and that fear is always in the back of our minds. This all started with some leg pain so if Joey has an ache in any part of his body we worry. We try not to, but we do.

Just like many other rare diseases, there is no known cause, no known cure and no money for research. Histio isn’t well known so large companies don’t write big checks for research. The government doesn’t allocate money for research. Most of the money raised for research comes from the families dealing with Histio, the families who also often have thousands of dollars in medical bills to pay.

Today, February 28, is International Rare Disease Day. This day is very important to my family and to families across the country and around the world who often feel alone in their medical journeys.

It’s a day specifically to raise awareness of the 7,000 rare diseases that affect 30 million people in the United States. It’s a day to realize that 50% of the people with rare diseases are children and that 30% of them will not live to see their fifth birthday. Out of those 7,000 rare diseases, the FDA hasn’t even approved a drug for 95% of them.

My 12-year-old son is one of the lucky ones and he embraces that. He also hopes to stay that way, to stay in remission. He has chosen to be an advocate for those who can’t fight for themselves and bring awareness. He was recently recognized by the city of Fort Thomas, Kentucky where the mayor made a proclamation honoring International Rare Disease Day and Histiocytosis in honor of Joey. He has distributed information throughout our neighborhood and spread the word at school.

Rare Disease Day is important to my family because it helps bring awareness to all these diseases that cause people to suffer. It brings awareness to the fact that there is incredibly little funding for research.

My hope for today is that people will learn about Rare Disease Day and be inspired to open their hearts, their mouths (spread the word) and ultimately their wallets to support the efforts of organizations that are working hard to understand more about rare diseases and how to treat them.

If you know someone who has a rare disease or whose child has a rare disease, take today as an opportunity to reach out to them. Let them know that you recognize their struggles and that you admire their strength.

If you feel called to support research efforts, you can donate to Cincinnati Children’s where research for rare diseases, including Langerhans Cell Histiocytosis, is ongoing. You can also donate to The Global Genes Project, the Histio Association or another foundation associated with a disease that is meaningful to you. Thank you for any and every donation, it will help.

You can also help by sharing information about rare disease through social media and in conversations. Visit Rare Disease Day’s website for more information.

Awareness is key. Joey has been busy raising awareness and I couldn’t be more proud of him. You can see what he’s been up to here and here.

I hope you will join us and spread the word and help find a cure for my son and millions of others.

Editor’s note: You can follow Gina’s blog at raising2tweens.wordpress.com.

Gina Stegner

About the Author: Gina Stegner

Gina Stegner and her husband Nick have five children, two of which are patients at Cincinnati Children’s Hospital Medical Center. She writes a blog about her son’s journey with a rare disease, Langerhans Cell Histiocytosis.

Write a comment

Your data will be safe! Your e-mail address will not be published. Also other data will not be shared with third person. Required fields marked as *

Comments

  1. Katrina Weghorn February 28, 17:31
    We are big fans of #TeamSuperJoey and I thought it was great to see him and you on Fox19 this morning. It's important that folks like you bring issues, like Histio and other rare diseases to light, so I thank you for that. I hope that Joey stays Histio-free! And I encourage everyone to show moms like Gina and other families some love by donating your time and money. Get the word out folks!
  2. Ashley @irishred02 March 01, 16:28
    Thank you for sharing Joey's story Gina! Team Joey!! And you have inspired me to see what I can do in my area to reach out to parents who have children with rare diseases.
  3. Melissa@stockpilingmoms March 01, 17:23
    Thanks so much for you dedication in spreading awareness of rare disease!
  4. […] 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’s Story on the […]
  5. Margie March 03, 14:32
    Joey is such a hero to our family. They are his classmates and members of his Odyssey of the Mind team. We want to help spread the word in any way we can. We love you guys. Thanks for all you do.