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My Story

Welcome to the My Story section of our website. This section is dedicated to the individuals we are fighting for. This web series is comprised of life stories, videos and biographies of those that are important to us and our cause. To submit your story please email mystory@emerydreifussmd.org.

Rafael Velez  0724/1950 - 11/29/2018                                                                          In Loving Memory

Rafael Velez is an accomplished attorney and he is my father. I am proud to tell his story to others that I talk to, especially about EDMD. My father was born before this disease had its name. He lived as if he did not have EDMD and never let it stop him from pursuing his interests in life.


My father also taught me a lot about a lot of things. To never let anyone take advantage of you. To fight and keep fighting if you want something or know that it is right. That you could basically make anything you ever needed in life with a little wood and the proper set of tools. He is an inventor, a lawyer, a dedicated arguer (being a Leo he also always assumes he is right) and my father.


His enduring inner strength and pride are sources of pride for him and for those of us that have the good will to know him. Below is a small part of his story as printed in Quest Magazine by the MDA.

"I was aware I had a problem from the time I was a small child," says Rafael Velez, a Hartford, Conn., attorney who has Emery-Dreifuss muscular dystrophy and a pacemaker. Velez, at the time of this article was 48, grew up in Puerto Rico and was as active as any other boy.

"I would play baseball, go deep-sea fishing, diving, snorkeling and swimming," he says. But one day, when he was 13, an aunt who was visiting told his mother that Rafael was "walking like a cowboy," with his arms bowing out as if he were ready to draw his guns. Also, he says, "I couldn't run like other kids."

Still, no one in the family had any muscle problems and they weren't overly concerned during Velez's childhood. Then, at 18, he entered the University of Puerto Rico in Rio Piedras and had a standard entrance physical.

"The doctor told me he couldn't hear a heartbeat," Velez recalls, "but he knew that I was alive. He wanted me to come back for a more thorough check, but I didn't do it for another year."

Then Velez started playing touch football. "When I was doing it, I was fine," he says. "But later, when I was in the classroom, I would notice that I'd get a funny feeling, like a dizzy spell for a few seconds. I knew that it had to do with either my eyes, my ears or my heart. My eyes were checked and they were 20/20. My ears were checked and they were fine." That left his heart.

"They checked me and said, 'You have a complete heart block. There's nothing wrong with beating at that rate at the present time, but you're racing cars and diving, and if this happens when you're racing a car, you could lose consciousness and crash, or when you're diving, you could drown.'"

Velez was hospitalized for evaluation and, that night, his heart rate dropped to about 15 beats a minute. The doctors told him that if he wanted to continue with his present activities, he'd have to have a pacemaker inserted. Velez told them, "OK. Go."

Pacemakers in the late 1960s were still in the early stages of development, and Velez had to have a number of them before he found one that really met his needs -- a rare type with a plutonium battery.

Rafael and his family spent years trying to diagnose his condition. There was also a doctor on 5th Avenue in NYC (that my uncle, who worked for the US Embassy in South America had arranged for me to see) who, after a careful work up, diagnosed me as suffering from "Arthrogryposis". I kept that diagnosis until an exhausting set of tests at Montefiore Medical Center in the Bronx's concluded I didn't suffered from it.

Over the years, while Velez's heart problem was well controlled, his skeletal muscles continued to weaken. In 1995, he picked up some MDA literature and started reading about a condition called Emery-Dreifuss muscular dystrophy that involved heart block. "I said, 'Bingo; that's me.'" The MDA clinic at the University of Connecticut in Farmington confirmed his own diagnosis.

Velez still has some muscle weakness, but, he says, "I lead a fairly active life. I still do swimming, and I still like to deep-sea fish." His active law practice covers personal injury and medical malpractice cases, divorces, custody suits and bankruptcy work.

He was divorced many years ago and has two daughters and two grandchildren. The pacemaker hasn't interfered with his love life. He says a recent companion at the time, a nurse, couldn't tell he had it.

He worries about young people whose heart problems may not be detected or who may fear the treatment. "When people die from my disease, they die fairly young because the heart block is not picked up," Velez cautions.

He's aware that most young people associate pacemakers with the elderly, so he's always happy to give talks to young men and women facing pacemaker implantation. In 1996, he received an MDA state Personal Achievement Award, in part because of this role as a pacemaker advocate.

When he was nominated for the award, Velez wrote: "I believe that the desire and motivation to get on with life comes from oneself with an 'I can do' attitude, the recognition that it could be worse, and, at least in my case, being very stubborn.'"