Finding Hope and Community Where We Least Expected
When day after day, year after year, revolves around your child’s chronic disease, it is easy to get down. Luckily, we were both about to find the hope we needed where we least expected it.
Last week my five-year-old asked me why he was sick. He wanted to know why there was no cure and why this had happened to him. I had no answer and could only offer a tearful hug. When day after day, year after year, revolves around your child’s chronic disease, it is easy to get down. Luckily, we were both about to find the hope we needed where we least expected it.
As a baby, Eldon was the light of my life. He was a happy, healthy, fun-loving little boy until something suddenly went very wrong. When he was two, he started waking in the night, crying from pain. He moved his toys to the floor to play lying down—he could no longer sit up to play. He was wasting away and no one knew how to help him.
Then our lives changed forever when he was diagnosed with Juvenile Myositis, a life-threatening disease with no cure (yet). With Juvenile Myositis, the immune system can attack nearly all systems of the body: heart, lungs, skin, muscles, etc. And the treatments are often worse than the disease itself.
Eldon has endured years of chemotherapy, IV plasma and steroid infusions, heavy doses of daily steroids, and more. He can’t control the medications he has to take or the nausea, migraines and other side-effects. He can’t control if his hands or legs will work or if he will be in pain. Last week, he wanted to know why this had happened to him and how he could make it better. Devastating words for a mother to hear and I had no answer.
But later that week, after checking our CrowdRise team fundraiser page, I found an answer I didn’t know we needed. We found other families on our fundraising team just like ours. And to Eldon’s surprise, he found children just like him. Juvenile Myositis is very isolating. Only about three children in a million are diagnosed and most kids will never know another child with the same disease. But suddenly we were connected to other families just like ours and we learned that they have similar stories and the same fears, dreams and hopes.
Then we got inspired.
My boys saw how other kids were raising money for their CrowdRise Holiday Challenge fundraisers and they wanted to join the movement. So in near-freezing weather, they set up a hot chocolate stand at the neighborhood sledding hill. Three-year-old Jack stood asking friends and neighbors to “Please buy hot chocolate. Please help my brother.” Eldon sold cookies. Both boys were so proud of the $43 they raised. They found hope by being part of a larger team working together for a cure.
And I found the same thing.
I support Cure JM because it is the only organization solely dedicated to Juvenile Myositis research and support. And I know that every dollar raised has a direct impact—95 percent of all funds raised go directly to research and programs. I joined the CrowdRise Holiday Challenge to help Cure JM win the $100,000 prize and fund much-needed research.
But since the Holiday Challenge began, I have gained so much more than I thought I would. I have connected with dozens of other families. I have learned that I am not alone and they have the same hopes and fears that I do. I have made new life-long friends and, hopefully, so has my son. More importantly, my son has found his voice. He has discovered that he can join with other kids battling Juvenile Myositis and together they can make a difference in their own lives. He has learned that hope doesn’t always find you, sometimes you have to go out and grab it. Hope for better treatments, hope for better understanding, and hope for a cure. And that is the greatest gift we could ask for this holiday season.
This project is part of GOOD's series Push for Good—our guide to crowdsourcing creative progress.