When 18-year-old Ryan Elm was diagnosed with a rare and progressive neurodegenerative disease three years ago, he had two options: give up, or make the most of every moment. Since then, he's skydived with the US Army, raced Ferraris with a NASCAR driver and knocked Egypt off his "bucket list," all the while Critical fundraising for scientific research. His mother, Tuba Alam, shares his story.
About three and a half years ago, my son Ryan was diagnosed with a progressive neurological disease called NBIA-MPAN. Share it with less than 100 people in the world.
We knew something was going on when his elementary school career changed. Ryan began walking on his graceful toes. No big deal, right? We did some occupational therapy, but as Ryan grew older, his symptoms worsened. He was constantly falling. The doctors came back and said it was cerebral palsy, but no damage was found on the MRI.
Eventually, my maternal instincts kicked in and I realized something else was going on. We took him to Children's National Hospital in Washington, D.C., and after bullying my way through the system and getting into arguments with doctors, we finally got our diagnosis: mitochondrial membrane-associated neurodegeneration, or NBIA-MPAN. It is a type of neurodegenerative disorder in which the brain accumulates too much iron. Symptoms are very similar to Parkinson's disease, dementia, cerebral palsy, and muscular dystrophy.
I remember asking, well, what's our game plan, and what's next? And the doctors looked at me and said, “There is no game plan. There are no treatments. We can give him muscle relaxants to treat the symptoms, but there is nothing we can do to fix it.” I couldn't believe what they were saying.
Later that month, we broke the news to Ryan. He obviously knew that the doctors were testing him, and that it might not be cerebral palsy. He kept asking, "What is this? What is this?"
His father promised him, "I can't promise you a long life, but I promise you that the life you have, when it's time to go, will feel like you've had a good life."
From there a spark ran in Ryan. I could tell he was just soaking in it. He came back to us that night and said, "I wasn't crying because I was afraid of dying, I was crying because I was afraid to leave you guys." And I was like, oh man don't say that! That was the only day he cried. He hasn't cried since. He never complained in his life.
Ryan told us he was going to make a bucket list, and we've just been checking things out since then. it's a long binding. He has skydived with the US Army. (My husband and daughter thought I was crazy for asking, but I said, "What's the worst that could happen? They say no?") He hopped in a Ferrari with a retired NASCAR driver; They closed the track for him for two hours and he loved it - it's all about the action and the speed. He's getting ready for bungee jumping soon, too. I can't believe he does that.
One of the other items on Ryan's list was to visit Egypt, and we just got back from the trip. He has always wanted to see the pyramids. Egypt is not known to be easily wheelchair accessible but it was on the list so we had to give it a try. I called Intrepid and asked, "Is this possible?" And they reviewed their team in Egypt and said, "Yeah, we can do it." Our captain, Muhammad Ali, made it easy with Ryan. Just above and beyond.
Ryan's favorite parts were the pyramids, for sure, and the hot air balloon ride. Both were on my bucket list! He actually told me his other favorite part — and that's Ryan — was the people. You don't have to give Ryan much, but if he has some people to connect with, he's in heaven. He's already asking us, “Hey, when are we going to see Ms.? Deb and Mr. Do you want to tag again?” They were two other travelers on the tour.
In fact, our group was already crying when the trip was over. It was amazing. When we were saying goodbye to everyone, my daughter cried, and Ryan was moved. And I said, "What's wrong?" And I looked around and Linda, another traveler, was crying too! Everyone really cared for each other and became friends on the tour. Ryan loved every minute of it, and we hope to book on Ryan's next big adventure: Australia with Intrepid in the spring.
Ryan is slowly getting worse, and as a mom, it feels like a stab in the heart with a knife. I can't let the wound heal. Once I accept one loss, another loss occurs. Then another and another ... I told my husband that I could not recover. I feel like my heart is bleeding constantly.
But Ryan is full of life. I was recently approached by two students on a field trip and they were like, “Ms. Scientist, may we ask you something? Why is Ryan so happy?” And I said, well, he loves life to the fullest. This is a phrase he uses. He always said he wanted to be treated like a normal person. He doesn't want people to feel sorry for him. Not a day goes by that he doesn't wake up with a smile on his face.
Ryan is currently using his story to raise groundbreaking research funds for NBIA-MPAN, a severely underfunded disease. If you would like to support the cause, you can make a donation over here. Ryan has already met his initial goal of $350,000 to start looking at MPAN, but more is needed to keep the fight going. You can follow the journey on #BeLikeRyan.
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