{"id":54022,"date":"2022-06-21T07:53:06","date_gmt":"2022-06-20T21:53:06","guid":{"rendered":"https:\/\/www.intrepidtravel.com\/adventures\/?p=54022"},"modified":"2023-07-19T04:44:15","modified_gmt":"2023-07-18T18:44:15","slug":"ryans-list-how-one-teenager-is-living-his-final-moments-to-the-fullest","status":"publish","type":"post","link":"https:\/\/www.intrepidtravel.com\/adventures\/ryans-list-how-one-teenager-is-living-his-final-moments-to-the-fullest\/","title":{"rendered":"Ryan’s List: How one teenager is living his final moments to the fullest"},"content":{"rendered":"\n

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\u2019s skydived with the US army, raced Ferraris with a NASCAR driver and ticked Egypt off his \u201cBucket List\u201d, all while <\/strong>raising crucial funds for scientific research<\/strong><\/a>. His mother, Tuba Alam, shares his story.<\/strong><\/p>\n\n\n\n

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.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

Eventually, my motherly instincts kicked in and I realised there was something else going on. We took him to the Children\u2019s 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\u2019s a type of neurodegenerative disorder where the brain accumulates too much iron. The symptoms are much like Parkinson\u2019s disease, dementia, cerebral palsy and muscular dystrophy.<\/p>\n\n\n\n

\"\"<\/a>
Ryan and Tuba in a hot air balloon in Egypt.<\/figcaption><\/figure>\n\n\n\n

I remember asking, okay, so what\u2019s our game plan, what\u2019s the next step? And the doctors just looked at me and said, \u201cThere is no game plan. There are no treatments. We can give him muscle relaxants to treat the symptoms, but there\u2019s nothing we can do to fix it.\u201d I couldn\u2019t believe what they were saying.<\/p>\n\n\n\n

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, \u201cWhat is it? What is it?\u201d 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, \u201cWhat will happen to me?\u201d He just started bawling. It was a mother\u2019s worst nightmare.<\/p>\n\n\n\n

His dad promised him, \u201cI can\u2019t promise you a long life, but I promise you that the life that you have, when it\u2019s time to go, that you\u2019ll feel like you\u2019ve lived many good lives.\u201d<\/p>\n\n\n\n

\"\"<\/a>
The family together, cruising down the Nile.<\/figcaption><\/figure>\n\n\n\n

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, \u201cI wasn\u2019t crying because I\u2019m afraid to die, I was crying because I\u2019m afraid to leave you guys.\u201d And I was like, oh man don\u2019t say that! That was the only day he cried. He\u2019s never cried since. He\u2019s never complained in his life.<\/p>\n\n\n\n

Ryan told us he was going to make The Bucket List, and we\u2019ve just been checking things off ever since. It\u2019s a long<\/em> list. He\u2019s skydived with the US army. (My husband and daughter thought I was crazy for asking, but I was like, \u201cWhat\u2019s the worst that can happen? They say no?\u201d) He\u2019s jumped in a Ferrari with a retired NASCAR driver; they closed down the track for him for two hours and he loved it \u2013 he\u2019s all about thrills and speed. He\u2019s getting ready to bungee jump soon, too. I can\u2019t believe he\u2019s doing that.<\/p>\n\n\n\n

\"\"<\/a>
Ryan skydiving with the U.S. Army.<\/figcaption><\/figure>\n\n\n\n

One other item on Ryan\u2019s list was visiting Egypt, and we just got back from the trip. He\u2019s always wanted to see the pyramids. Egypt isn\u2019t 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, \u201cIs this doable?\u201d And they checked with their team in Egypt and said, \u201cYep, we can do this.\u201d Our leader, Mohammed Ali, just made it so easy with Ryan. Just above and beyond.<\/p>\n\n\n\n

Ryan\u2019s 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 \u2013 and this is so Ryan \u2013 was the people. You don\u2019t have to give Ryan much, but if he has some people to socialise with, he\u2019s in heaven. He\u2019s already asking us, \u201cHey, when are we going to see Mrs. Deb and Mr. Mark again?\u201d They were two other travellers on the tour.<\/p>\n\n\n\n

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, \u201cWhat\u2019s wrong?\u201d 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\u2019s next big adventure: Australia with Intrepid in the spring.<\/p>\n\n\n\n

\"\"<\/a>
The family loved their Egypt trip. Next stop: Australia!<\/figcaption><\/figure>\n\n\n\n

Ryan is slowly getting worse, and as a mother, it feels like a jab in the heart with a knife. I can\u2019t 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\u2019t heal. I feel like my heart is just constantly bleeding.<\/p>\n\n\n\n

But Ryan is just so full of life. A couple of students on a field trip recently came up to me and were like, \u201cMs. Alam, can we ask you something? Why is Ryan so happy?\u201d And I said, well, he loves life to the fullest. That\u2019s a phrase that he uses. He\u2019s always said that he wants to be treated like a normal person. He doesn\u2019t want people to feel sorry for him. There isn\u2019t a day that goes by that he doesn\u2019t wake up with a smile on his face.<\/p>\n\n\n\n

Ryan is currently using his story to raise groundbreaking research money for NBIA-MPAN, a critically underfunded disease. If you\u2019d like to support the cause, you can donate <\/strong>over here<\/strong><\/a>. 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.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

When 18-year-old Ryan Alam was diagnosed with a rare neurodegenerative disease, he had two choices: give up, or squeeze the most out of every moment. <\/p>\n","protected":false},"author":16246,"featured_media":54025,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_lmt_disableupdate":"","_lmt_disable":"","_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"enabled":false},"version":2}},"categories":[3108],"tags":[265,557],"class_list":["post-54022","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-good-stories","tag-family-adventure","tag-traveller-stories"],"acf":[],"yoast_head":"\nRyan's List: How one teenager is living his final moments to the 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