My Story with MLD

12We all make decisions every day in our lives, whether for ourselves or for others, or for better or worse. They impact the life we live, and the loved ones who surround us. From the time we are born and as we grow up, certain events may happen unexpectedly. As many ups as I’ve had in my short 22 years in my life, I’ve unfortunately have had a handful of significant downs —more than some people go through in a lifetime. I’ve had close loved ones pass away all through my life as well as family situations and personal situations that haven’t gone so well. In May of 2013 though, my life hit a wall.

In early January of 2013, my 27 year old brother Nathaniel Michael Bewley had what we thought was just a pinched nerve in his arm, but it wasn’t (if we only knew what the road ahead was going to be like). As February came by, he got worse; he was admitted to the hospital because he started to lose feeling in both arms, couldn’t walk on his own, and needed assistance eating. Of course we thought the doctors would figure this “bug” out and he’d be back to normal. He was sent home with medicine and figured it would work. Before we knew it, he was back in the hospital. At this point, he couldn’t walk on his own, barely could move his arms, and could only speak a few words at a time (not even a whole sentence).

By the beginning of March, he was admitted to a Cleveland hospital. As the days went on, the team of doctors kept trying to figure out what was going wrong. They would say it was “this,” but then they would find out it wasn’t. It was frustrating and stressful for us because we weren’t sure if he was going to recover from “this” disease. In mid-March, he ended up losing his eyesight. We couldn’t communicate through eye contact anymore.  We didn’t know what to think or do anymore except to continue to pray for Nate and that he would recover.

As time went on, he kept getting worse. He had to have a trach tube put in to help him breathe and he was almost unresponsive to touch. With family and friends visiting him almost every day, it was unbearable to see the way he looked. We would talk to him as if he could respond to us, we’d joke around with stories from the past and tell him about what all was going on at home and how much we missed him. We knew he could hear us because his heart rate would increase significantly when we would say certain things or when a cousin from out of town would visit.

May. The month of May came around, and he was getting worse and worse every day, even though we still had faith he was going to get better. At this time, Nate started losing his bodily functions, and he had serious infections that were not going away. So, my mom, Kathy, had to make probably the toughest decision in her life; let Nate continue through this devastating circumstance, or take him off the ventilator and let God decide the fate of his life. On May 19, 2013, my mom decided to take him off of the ventilator and put it in God’s hands. Before he was taken off, we had a special Mass for him. My entire family and close family friends gathered for Mass inside his hospital room. After this powerful Mass, we all had our chance to say our individual final goodbyes in this life for him. When everyone was done, we gathered close as we watched him get taken off the ventilator as my mom held his hand through the end saying “It’s OK to go, everything is going to be all right.” Why did she say this? Because we knew he was going up to be in the presence of the Lord, be at peace, and be reunited with our dad, Douglas Patrick Bewley (11/30/03) and with many of our other loved ones as well.

We ended up finding out what “this” thing was that Nate had. He had a disease called metachromatic leukodystrophy or MLD. This disease attacks the myelin in your brain, basically resulting in the nerves not being able to communicate with each other (due to a lack of an enzyme being produced to protect them). MLD is a rare disease: They say one in every 40,000 people has it. It is a genetic disease and you only get it if both parents are carriers and you end up getting both “bad” genes. So in June, my six siblings and I got tested to see if we had MLD as well. It turned out all my siblings were just carriers, except for me.

I took the news well as if it was nothing, but I had my moments where I was scared and didn’t know what to think. There is no “cure” for this disease, however, doing a bone marrow transplant (BMT) would give me the opportunity to produce this enzyme I’m missing and prevent this disease from evolving. There are always risks with BMT, however, it does have its benefit of preventing this disease from evolving in me. So the question was, do I let my life play out and take the risk of the disease activating, or do I use this opportunity presented to me? I told myself when I found out I had it, that I would take the opportunity if there was any to “fix” this disease because I know Nate would have taken the opportunity as well if it had been caught in time.

Over the summer I went in to get a baseline of my entire body at Children’s Hospital of Pittsburgh of UPMC, which is the central location for the study of the disease that I have. I was admitted to Children’s Hospital on November 19, 2014. During the next two and a half weeks I received medicine, fluids, and doses of chemotherapy — I received 30 percent of the actual 100 percent of chemotherapy that is normally given to cancer patients when they go through BMT.

On December 4, I had my bone marrow transplant.  Throughout the rest of the month, I continued to receive medicine and fluids to help boost and bring back my immune system since it couldn’t produce enough on its own. I was recovering well until all of a sudden on December 29, I had excruciating pain in my abdomen. I had no idea what was going on, however, the nurses got my pain under control and I was able to relax. Before I knew it, I was heading down to surgery to have my gall bladder removed.

After my gall bladder was taken out, I felt a lot better. The pain was gone and I felt like I was on the road to recovery. However, there was another bump in the road. As I was recovering, I didn’t react well enough to some of the medicine I was taking and it caused some problems. For a whole week, I did nothing but have the shakes, vomit, and couldn’t sleep. I couldn’t get comfortable which started to affect my back, and since I couldn’t really get out of my room, I began to lose my endurance to walk.

The teams of doctors were trying to figure out what was wrong with me. They ran tests and thought I had an abscess, but it turned out I didn’t. After about a week, I began to get better. It was like a dial slowly turning for the better, and it was! It took me a while to get my appetite back, but I gradually worked my way back up starting with something like lemon ice, to grapefruit, and then to mini pasta containers.

On January 22, I was finally discharged from the hospital to Family House and was home soon after. Since my recovery, I’m more than happy to say that I’m back to be doing the normal things I could do before I went in for my transplant: playing soccer, softball, working, doing yard work, driving, going out with friends, going to public places such as Progressive Field to watch Indians games, and eating out! My endurance was really down while I was recovering. Just by walking to the car, around the grocery store, and making a few runs playing soccer (when I was given the green light to play), I was tired and needed a seat and to take a breather.

With the support of my family pushing me, and by taking it one step at a time, my endurance is back to where it used to be, if not better. Every day I think about how blessed and how fortunate I am to be able to be doing all of these activities again. If you told me back in January that I would be running around and being back to “normal” by now, I wouldn’t have believed you. Being in the hospital for roughly three months opened my eyes up that much more too many aspects of life. It’s a privilege to not only be participating in activities and playing sports that I love again, but doing them again with my family and friends.  Not only am I doing really well, but I’m glad to say I’ll be going back to Cleveland State University in the fall and decided to switch my major to Medical Technology.

I want to thank my family, friends, and everyone who has prayed, visited, and/or supported me through this process. I also want to thank the nurses, doctors, surgeons, and the entire medical staff at Children’s Hospital who have taken care of me. I can’t thank everyone enough.

For more information on the Program for the Study of Neurodevelopment in Rare Disorders (NDRD) at Children’s, please visit www.chp.edu/CHP/neurodevelopment+in+rare+disorders.

  • Kelly

    I’m so glad you have recovered. My little boy passs away over three years ago from MLD at age 6. I wish he had had the opportunity as you did. Many blessings to you and I wish you a long and fruitful life.

  • Samantha McGregor

    My daughter, Emma McGregor was diagnosed with juvenile MLD in 2003. She under went a stem cell transplant at Duke and today, 12 years later is still alive. She has many medical issues but always positive and loving. Your story made me cry and smile at the same time. Well done for kicking MLD in the BUTT!