Home » Ryan’s list: How a teenager lives his last moments to the fullest

Ryan’s list: How a teenager lives his last moments to the fullest

When 18-year-old Ryan Alam was diagnosed with a rare, progressive neurodegenerative disease three years ago, he had two choices: give up or make the most of every single moment. Since then, he has parachuted with the US Army, ridden Ferraris with a NASCAR driver and marked Egypt by his “Bucket List”, all the while to provide crucial funding for scientific research. His mother, Tuba Alam, shares her 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 gait changed in elementary school. Ryan started walking on his toes. No big deal, right? We did some occupational therapy, but as Ryan grew, his symptoms got worse. He was constantly falling over. Doctors came back and said it was cerebral palsy, but no damage was found to his MRI.

Eventually my maternal instincts struck and I realized that something else was going on. We took him to the Children’s National Hospital in Washington, DC, and after bullying me through the system and getting into quarrels with doctors, we finally got our diagnosis: Mitochondrial membrane protein-associated neurodegeneration or NBIA-MPAN. It is a type of neurodegenerative disorder in which the brain accumulates too much iron. The symptoms are very similar to Parkinson’s disease, dementia, cerebral palsy and muscular dystrophy.

Ryan and Tuba in a hot air balloon in Egypt.

I remember I asked, 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 is nothing we can do to correct it.” I could not believe what they said.

Later that month, we told Ryan the news. He obviously knew that the doctors were testing him and that it might not be cerebral palsy. He kept asking, “What is it? What is it?” So we put him at the table. I could feel on 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 crying. It was a mother’s worst nightmare.

His father promised him, “I can not promise you a long life, but I promise you that the life you have when it’s time to go, that you will feel that you have lived many good lives.”

The family together on a cruise down the Nile.

From there, a spark went into Ryan. I could feel him just sucking it in. He came back to us that night and said, “I did not cry because I was afraid to die, I cried because I was afraid to leave you.” And I thought, oh man, do not say that! It was the only day he cried. He has never cried since. He has never complained in his life.

Ryan told us he was going to make The Bucket List and we’ve been checking things out ever since. It is a long list. He has parachuted with the US Army. (My husband and daughter thought I was crazy to ask, but I thought, “What’s the worst that can happen? They say no?”) He jumped in a Ferrari with a retired NASCAR driver; they closed the track down for him for two hours and he loved it – he’s all about excitement and speed. He’s also getting ready to bungee jump soon. I can not believe he does.

Ryan parachutes with the U.S. Army.

Another item on Ryan’s list was visiting Egypt and we have just returned from the trip. He has always wanted to see the pyramids. Egypt is not known for being particularly accessible to wheelchair users, but it was on the list so we had to give it a try. I called Intrepid and asked, “Is this possible?” And they checked with their team in Egypt and said, “Yes, we can do this.” Our manager, Mohammed Ali, made it just as easy with Ryan. Just beyond.

Ryan’s favorite parts were the pyramids, for sure, and the hot air balloon ride. Both were on The Bucket List! He actually told me that his other favorite part – and that’s Ryan – was the people. You do not have to give Ryan much, but if he has some people to socialize with, he is in heaven. He’s already asking us, “Hey, when are we going to see Mrs. Deb and Mr. Mark again?” They were two other travelers on the trip.

In fact, our group actually cried when the trip ended. It was amazing. When we said goodbye to everyone, my daughter cried and Ryan was emotional. And I thought, “What’s wrong?” And I looked around, and Linda, another traveler, cried too! Everyone really took care of each other and became friends on the trip. Ryan loved every minute of it and we hope to book in Ryan’s next big adventure: Australia with Intrepid this spring.

The family loved their trip to Egypt. Next stop: Australia!

Ryan is slowly getting worse and as a mom it feels like a stab in the heart with a knife. I can not let the wound heal. As soon as I accept one loss, another happens. So one more and one … I told my husband I can not heal. I feel like my heart is just bleeding constantly.

But Ryan is just so full of life. A couple of students on a field trip recently came up to me and said, “Ms. Alam, may we ask you something? Why is Ryan so happy?” And I said, yes, he loves life to the fullest. It’s a phrase he uses. He’s always said he wants to be treated like a normal person. He does not want people to feel sorry for him. It does not work a day when he does not wake up with a smile on his face.

Ryan is currently using his story to raise groundbreaking research funding for NBIA-MPAN, a critically underfunded disease. If you want to support the cause, you can donate over here. Ryan has already reached his original goal of $ 350,000 to kick-start MPAN research, but more is needed to continue the fight. You can follow the journey on #BeLikeRyan.

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