When 18-year-old Ryan Alam was diagnosed with a rare, progressive neurodegenerative disease three years ago, he had two choices: give up, or squeeze the most out of every single moment. Since then, he’s skydived with the US army, raced Ferraris with a NASCAR driver and ticked Egypt off his “Bucket List”, all while raising crucial funds 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. He shares it with fewer than 100 people in the world.
We knew something was going on when his walking changed in elementary school. Ryan started walking on his tippy toes. No big deal, right? We did some occupational therapy, but as Ryan grew, his symptoms became worse. He was constantly falling over. The doctors came back and said it was cerebral palsy, but there was no damage found on his MRI.
Eventually, my motherly instincts kicked in and I realised there was something else going on. We took him to the Children’s National Hospital in Washington, DC, and, after bullying my way through the system and getting into arguments with doctors, we finally got our diagnosis: Mitochondrial membrane protein-associated neurodegeneration or NBIA-MPAN. It’s a type of neurodegenerative disorder where the brain accumulates too much iron. The symptoms are much like Parkinson’s disease, dementia, cerebral palsy and muscular dystrophy.
I remember asking, okay, so what’s our game plan, what’s the next step? And the doctors just 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’s 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 the doctors were testing him, and that it might not be cerebral palsy. He kept asking, “What is it? What is it?” So, we sat him down at the table. I could tell by his lips that he was getting really scared. We told him what it was, and he said, “What will happen to me?” He just started bawling. It was a mother’s worst nightmare.
His dad promised him, “I can’t promise you a long life, but I promise you that the life that you have, when it’s time to go, that you’ll feel like you’ve lived many good lives.”
From there, a spark went off in Ryan. I could tell he was just soaking it in. He came back to us that night and said, “I wasn’t crying because I’m afraid to die, I was crying because I’m afraid to leave you guys.” And I was like, oh man don’t say that! That was the only day he cried. He’s never cried since. He’s never complained in his life.
Ryan told us he was going to make The Bucket List, and we’ve just been checking things off ever since. It’s a long list. He’s skydived with the US army. (My husband and daughter thought I was crazy for asking, but I was like, “What’s the worst that can happen? They say no?”) He’s jumped in a Ferrari with a retired NASCAR driver; they closed down the track for him for two hours and he loved it – he’s all about thrills and speed. He’s getting ready to bungee jump soon, too. I can’t believe he’s doing that.
One other item on Ryan’s list was visiting Egypt, and we just got back from the trip. He’s always wanted to see the pyramids. Egypt isn’t known to be very wheelchair accessible, but it was on The List, so we had to give it a try. I called up Intrepid and asked, “Is this doable?” And they checked with their team in Egypt and said, “Yep, we can do this.” Our leader, Mohammed Ali, just made it so easy with Ryan. Just above and beyond.
Ryan’s favourite parts were the pyramids, for sure, and the hot air balloon ride. Both were on The Bucket List! He actually told me his other favourite part – and this is so Ryan – was the people. You don’t have to give Ryan much, but if he has some people to socialise with, he’s in heaven. He’s already asking us, “Hey, when are we going to see Mrs. Deb and Mr. Mark again?” They were two other travellers on the tour.
In fact, our group was actually crying when the trip ended. It was amazing. When we were saying goodbye to everybody, my daughter got teary, and Ryan got emotional. And I was like, “What’s wrong?” And I looked around and Linda, another traveller, was crying too! Everyone just really looked out for eachother and became friends on the tour. Ryan loved every minute of it, and we’re hoping to book in Ryan’s next big adventure: Australia with Intrepid in the spring.
Ryan is slowly getting worse, and as a mother, it feels like a jab in the heart with a knife. I can’t let the wound heal. As soon as I accept one loss, another one happens. Then another and another…I told my husband that I can’t heal. I feel like my heart is just constantly bleeding.
But Ryan is just so full of life. A couple of students on a field trip recently came up to me and were like, “Ms. Alam, can we ask you something? Why is Ryan so happy?” And I said, well, he loves life to the fullest. That’s a phrase that he uses. He’s always said that he wants to be treated like a normal person. He doesn’t want people to feel sorry for him. There isn’t a day that goes by that he doesn’t wake up with a smile on his face.
Ryan is currently using his story to raise groundbreaking research money for NBIA-MPAN, a critically underfunded disease. If you’d like to support the cause, you can donate over here. Ryan has already hit his initial goal of $350,000 to jump-start MPAN research, but more is needed to continue the fight. You can follow the journey at #BeLikeRyan.
