Cincinnati Children's Blog

Duchenne Muscular Dystrophy Patient Gets New Lease on Life

Duchenne Muscular Dystrophy Patient Gets New Lease on Life

This morning, Jason Williams of Peebles, OH, joined his doctors in a room full of news media representatives as they described the first-of-its-kind surgery that Jason agreed to at the beginning of September. He says it was as much for other Duchenne muscular dystrophy (DMD) patients as it was for himself.

Jason, 29, was diagnosed with DMD when he was 7. Last month, he made the brave decision to have a left ventricular assist device (LVAD) implanted in his chest to help his failing heart keep pumping. The LVAD is an option for patients with other types of cardiac-related conditions, but Jason’s surgery is believed to be the first for a patient with DMD. His doctors sat it could add years or even decades to his life.

Jason’s story

Jason was an active boy up until he was about 7 years old. His mom noticed that he could not climb stairs the way he had. He also couldn’t ride his bike up their hill the way he loved to do. Mom took him to their pediatrician, who referred them to orthopaedics at Cincinnati Children’s.

Upon evaluation, Jason was immediately referred to neurology, where the diagnosis of Duchenne muscular dystrophy was made. It was an overwhelming time for the family. They were told his life expectancy would only be into his late teens or maybe early twenties.

Mom was committed to giving Jason the best life possible and encouraged him in school and play. He fought hard to stay out of the wheel chair, but by 11 years old he needed it. He got a power chair when he was 12. He had a group of boys in the neighborhood that he “ran” with. They had all sorts of fun and fully accepted Jason – wheel chair and all. Mom and Jason laughed as they told a story of Jason attempting to cross a little bridge over a small stream in the back of their house. Jason ended up falling off the bridge into the stream in his wheel chair. Jason was fine, but worried he had hurt his “ride.”

Jason did well in school. He completed a graphic arts vocational program in his school district and graduated from high school at 18 (Class of 2001). He has always loved sports, and during these years he watched a lot of them. He loves the Reds, Bengals and at that time Michael Jordan. Like many teenagers, he liked to hang out with friends and play video games. He went to prom and had a good social life.

After graduation, he became a 911 operator. His first day on the job was the day of the Sept. 11 twin towers tragedy.  He remembers not wanting to leave work that day. He just wanted to stay and help. During these years he developed an interest in history, politics and government.

He worked as an operator until he was 24 years old. At this time, he started to feel tired all the time. His feet and belly were swollen. He was in heart failure. After his cardiology evaluation, he was told he would have to be admitted to the Cardiac Intensive Care Unit and immediately started on milrinone, a medication used in the short-term treatment of congestive heart failure. He was scared. He felt this could be the end of his life. But it wasn’t. The milrinone worked and his symptoms subsided, until about six months ago. He again started to feel more and more tired and have more swelling. What would help him this time?

That help came in an offer from Drs. John Lynn Jefferies and David Morales to put in the Thoratec Heartmate II, a ventricular assist device. Jason did it for a simple reason – “I wanted to live longer.”

As Jason and his family weighed the risk of surgery vs. the alternatives; the decision was easy. The device was the only way to extend his life beyond another year. Jason still had life to live and he enjoyed the life he had. He decided to go ahead with the surgery.

Today, Jason has discharge from the hospital in site. And, he has simple pleasures in mind. He wants to be in his own house and his own bed. He wants to go on his first hunting trip. He wants to simply go to a family function and not be too tired to stay the whole time. A big goal for the family is to visit Gettysburg, because of Jason’s love of history.

Jason said, “I just wanted to live longer and help other people.” Those other people are the men with Duchenne facing heart failure and death. Jason hopes that all his doctors and nurses have learned from his surgery and recovery and can offer this treatment to other boys and men with Duchenne. Mom hopes that in the future it can be offered even earlier as a treatment option. Her hope is that the patient can be in even better condition than Jason was so that the recovery is even easier.

Both Mom and Jason agree that their faith has carried them through his disease, the Heartmate insertion and the recovery.

Jason and his mom Karen are hopeful that the LVAD will give Jason the years that he needs to be able to experience everything he’s dreamed of. They also hope that the information Jason’s doctors glean from his surgery and recovery will help the procedure become an option for many other boys and young men with Duchenne.

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