Heather Bellamy spoke with Steven Harris about what he endures every day because of Duchenne muscular dystrophy and the joy he has found in the midst of his suffering

Steven Harris

In the UK each year, 100 boys are diagnosed with Duchenne muscular dystrophy, a neuromuscular condition caused by the lack of a protein called dystrophin, for which there is no cure. It is one of the most common and severe forms of muscular dystrophy and usually affects boys in early childhood. Men with the condition will usually only live into their 20s or 30s.

At Cross Rhythms we have had the privilege of getting to know an inspirational Christian called Steven Harris. He began to show symptoms of this disease at the age of three, but has recently and miraculously celebrated his 31st birthday.

Steven demonstrates an amazing joy and love for God and life despite his incredible suffering and we hope that you will be as impacted by his life and faith as we have been at Cross Rhythms.

Heather: When were you first diagnosed with muscular dystrophy?

Steven: My mom tells me that I was first diagnosed when I was three years old. My uncle noticed that I fell down a lot and suggested to my mom that she take me to a doctor.

Heather: What were the initial symptoms?

Steven: I think some of the initial symptoms were falling down a lot and walking a little oddly.

Heather: How has this genetic condition progressed over the years?

Steven: It might take a while to explain it, but here we go.

When I first started school it wasn't anything you would notice a whole lot. I had to go through kindergarten twice. The thing I remember first starting to notice, was when we would run to gym class, I was always the last one there. Then, I had to get these really uncomfortable leg braces at the beginning of first grade, when I was six or seven years old. Also, I had a bad bout of pneumonia. Then, I started falling down so much that they were worried that I would get injured, so I got a manual wheelchair in the second grade.

Eventually, I got to the point where my arms were too weak to push the wheelchair and I got my first electric wheelchair in the fifth grade school year. I probably had a bad sinus infection every summer to the sixth grade. In 8th grade I got a really bad pneumonia or respiratory infection that almost killed me. Then after that, I started having lots of problems with respiratory issues and had to start taking breathing treatments. It's like a medicated mist that you breathe in and out of in a machine. When I inhale, it blows air into the lungs and when I exhale it shuts off. Then I think it was my sophomore year of high school that I got the same respiratory thing with lots of vomiting. It made me so dehydrated that I got delirious and my parents had to rush me to the hospital. They tell me that I was moaning and pale as a sheet. During that time I could see in the spirit and I could see demons with swords coming at me, but their swords would never hurt me. Then the Lord gave me a vision and there was nothing but clouds and blue sky, then the red mediaeval style banner came down and there was a sword with the blade pointing up and above that was a dove with flames surrounding it and underneath all that it said "Walk with God".

In about 2008 and again in 2009, I had an impacted bowel. That's where you get a blockage in your colon and it makes it where you can't poop and it's excruciating pain. That's when I learned an enema can be your best friend. Lol - hope that isn't too much info. Some time after that, I choked on some water and it started getting harder to eat, so I had to start blending my food in order to make it easier to eat and I had to take some stool softener and mirilax every other day or less to make sure my bowels are blockage free. Also, I used to brush my teeth, but I had to stop because the toothpaste gave me bad congestion; so I try to wipe them off with a paper towel at night and that seems to work.

When I was a kid all the way up until I graduated high school I used to be able to drive around by myself, using a regular joystick on my wheelchair. Then I had to get another wheelchair with a mini joystick to make it easier to drive; it's very sensitive. Now I'm down to the point where I can't go to the store or doctor, I can only go outside when it's about 65 to 70 degrees. I can only use the van in case of an emergency.

Heather: So were you able to complete your education?

Steven: Yes, I was able to complete my education. I went to Westport Elementary School and I went to Study Middle School and I graduated from Hilcrest High School in 2002.

Heather: Did you enjoy school?

Steven: I enjoyed school for the most part. There are only a couple things I didn't enjoy. I was a horrible speller and not so great in math. Fortunately, I had a tutor named Mr. Riburg in 5th grade; I wasn't so great at studying and reading, but he got me and others excited for studying and reading. I loved science until they introduced mathematics into it. Lol...But I still love science and history and I ultimately enjoyed biblical archaeology and art and graphic design. I took architectural design, but I had to drop the class because it was so hard.

Heather: Please could you describe a day in your life currently?

Steven: In a normal day, my brother, who is my aid as well, comes in and helps me get dressed and use the restroom. He gets me dressed and puts me in a wheelchair. Then he sets up my breathing treatment and puts the medicine in it. After an hour, he comes in and does percussion, which you can think of as a super duty massager, which starts on the bottom and pushes it upward. It vibrates my chest in order to bring up any congestion that might be stuck in my lungs. Then I do another round of percussion an hour later and after that, I go into the living room and use a machine called a cough assist. This machine blows air into your lungs and sucks it out. My lungs are very weak and I have a hard time making productive coughs on my own. After a time, I take some Mucinex as well as an all natural supplement that helps break up congestion. I wait about 45 minutes and go to the restroom. Then I eat for a while and then I go to the restroom and then I finish eating. Then I go to the restroom and the whole cycle kind of starts over again. I also have to be repositioned every time I use the restroom. Then, I'm ready for the second breathing treatment because I get short of breath by then. I'm on oxygen 24-7.

My days don't usually start until 1 o'clock in the afternoon. It usually takes me about two hours to eat. Then, my mind is kind of in a blur when I read the Bible because of lung and oxygen issues that have happened recently.