Yesterday, the 2010 WebMD health heroes were announced.
http://www.webmd.com/healthheroes/default.htm
Pat Furlong, the founding president and CEO of Parent Project Muscular Dystrophy was among the honorees. Memories of my first discussion with Pat and Jon’s diagnosis came flooding back. Jon’s diagnosis was confirmed on December 31, 1997, after two months of testing and waiting.
I remember sitting in my office at Kodak, when I received a phone call from Dr. Tawil at the University of Rochester. He wanted to see my husband and I in his office at noon. I remember my hands shaking and my voice shaking as I spoke with my husband in his office. We had a very somber drive to the U of R, both hoping and praying that the doctor would say that Jon had something other than Duchenne. My husband and I had been web searching symptoms and testing results since Oct. The pediatrician wanted to make sure that Jon’s speech and motor delays where not due to a medical problem. As we walked from the car to Dr. Tawils office, it was a typical cold day for December in Rochester, what struck me though, was that it was sunny when normally in Rochester it’s gray and cloudy. I hoped that the information the doctor was about to give us would reflect the brightness of the day. The discussion with the doctor was surreal and somber. He tried to explain that there was some hope, but the normal prognosis of Duchenne did shorten the patient’s life span. We left the office, picked the kids up from day care and gave them both big hugs. Normally, on New Year’s Eve we have a nice dinner; stay up; watch the ball drop in time square; toast champagne. We went to bed early that night, silently crying ourselves to sleep and wondering what the future would bring for our son learning to live with Duchenne.
Slowly we began searching for organizations that might have information that would help us. Of course we knew of the MDA, but their focus seemed so dispersed. We wanted an organization whose focus was just Duchenne. During one of my husbands late night web searches he found an organization and sent an email. A few weeks later as we slowly started to engage in life again; the phone rang. It was a Sunday afternoon. I answered the phone and the woman on the phone introduced herself as Pat Furlong. She asked me how we were doing. I’m very stoic when I don’t know someone, however, I found myself starting to choke up as I spoke with this kind woman. I said we were fine considering; taking it one day at time. Pat in her wisdom said that taking life with Duchenne one day at time would become our coping mechanism. Families dealing with Duchenne don’t look too far ahead into the future. There is hope in the future but hope for new therapies may also come with baited breath.
Pat spent 45 minutes on the phone with me and, gave me her contact information. I hung up not feeling so alone in this very unfamiliar world. Pat was the first person I spoke with whose family was affected by Duchenne. During our conversation she suggested that my husband and I go to Pittsburgh to attend the conference on care and research for Duchenne in June. I thanked Pat for her time, and I would speak with my husband regarding attending the conference. I spoke with my husband about the conversation I had with Pat. We decided to attend the conference in June of 1998. It was held at the University of Pittsburgh and not a hotel. We had rooms in the dorms. PPMD started in 1994. It was clear to me that this young organization’s focus was to help families navigate Duchenne and provide insights on how to buy five more minutes. I felt like it was crash course in care and research for Duchenne. My head was swimming with pictures of muscle tissue and terms I had trouble pronouncing. We also came home with some concrete things that we could do for our son to slow down the progression.
I didn’t realize then, that now12 years later I would consider; Pat Furlong, Donna Saccamano, and people around the world like Elizabeth Vroom, Dr. Biggar and Helen Posselt my closest allies in fighting Duchenne. Their combined knowledge and insights have helped my family navigate Duchenne to aid Jon in reaching his potential despite the odds.
I am thrilled that Pat was awarded this honor. I am grateful to know Pat and deeply admire her tireless dedication to all the families, and boys affected by Duchenne.
