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!

 

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One thought on “My Son Has a Rare Disease

  1. Pingback: Cincinnati Children’s Brings Parents Together at New Urgent Care Facility | raising2tweens

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