JOSH & LEA
My first Donor Dash 5K was 2 years ago, after I was incredibly moved by reading a story by my friend Lea, chronicling the tragic story of her son Josh, and her actions to do whatever she could to spare other parents from having to endure what she did. In this case I think it's best for the subject of this story to tell it herself, so with Lea's permission the following comes directly from the Team Josh Facebook page.
"Before 1999, I knew nothing about Organ Transplants or the need for Organ Donors. It wasn’t a part of MY life so I didn’t give it much thought. It seemed as though the only things I ever heard were negative, like celebrities seemingly buying their way to the top of a transplant list, or that doctors wouldn’t do what they could to save someone who was a designated organ donor, because they were waiting like vultures to harvest organs. (REALLY? Because the first thing they do in an emergency, is search a wallet for a license to see if someone is an organ donor? Uhhh, NO)
I was one of those people at the DMV, who, when asked if I wanted to be a donor, found it too easy to say NO. I even remember thinking that it wasn’t something that needed to be decided right at that moment, that “someone else” could figure out what to do if I died. Besides, who would want MY organs anyway? I was a heavy smoker at the time, and not the healthiest person in the world. Surely, they would be of no use to anyone anyhow.
Then, in 1999, the unthinkable happened. Josh started to have some issues that were getting progressively worse. He had congenital heart defects that had been well managed and until this point needed no medications and had no restrictions. I will never forget the moment when Dr H came from the cath lab to tell me “Joshua needs a heart transplant” I’m pretty certain that those words echoed loudly through the hallways for a good solid minute, because it sure felt that way. It was like getting punched HARD, directly in the face with a brick. MY SON needed a heart transplant TO LIVE. W.T.H?? Oh, and what was that you just said Dr H? He must now live here on the Cardiac Unit at CHOP until that happens? OK. We can do this. A month or 2 at best. After all, Josh was AB+ blood type – the universal recipient. This should happen pretty fast. On the surface, it seemed like it was going to be easy. We quickly found that there is sooo much more involved in finding the right match, but then who knew? Remember? It was never my problem, so I really didn’t need to know anything about it. UNTIL THAT MOMENT
Most of you know how this story ends. 91/2 months later, Josh’s heart stopped. He died waiting for that heart transplant. The day we left CHOP with all of his belongings, we counted. We counted the number of kids we met on this journey, and that number was staggering. 23 kids were on the heart transplant list during that time. We got to know them, their families & their stores. We became family – supporting each other in any way we could through the most difficult time of our lives. 23 kids, and we could only count FIVE that made it out alive with successful transplants. And that my friends, is the #uglytruth.
Our story is just a very tiny glimpse into the world of people out there waiting for a lifesaving transplant. This was ONE hospital, in ONE city, for 9 1/2 months, and only KIDS needing HEART transplants. So when you hear that one person dies every 18 hours waiting for a lifesaving transplant, and that statistic sounds too astronomical to believe, think again.
If you’re still on the fence about being an organ donor, or if you are as I was, and think that it’s “someone else’s” problem, please reconsider. When Josh died, Dr H approached me to ask if I would allow Josh to be a bone & tissue donor. In spite of all we’d been through, my first reaction was to say no. I was in a place of overwhelming pain, and thought “if you couldn’t give my son a heart, why the hell should I agree to allow him to be a DONOR?” I made the decision to allow for this through gritted teeth. I was beyond hurt and angry, but somehow knew that it was the right thing to do. It was one of the hardest decisions I’ve ever had to make, but one that I will NEVER regret. Because Josh was a donor, 2 people have the gift of sight, and over 100 people have benefited from bone grafts and treatments of other musculoskeletal issues. It’s such a wonderful thought knowing that there are 2 people out there, seeing the world through his eyes. 
If our story touches even ONE person enough to want to make the decision to become a donor, then we’re doing our job.
And THAT'S why organ donation matters to me.
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