Evan & Dr. Brenda Wong, Ciincinnati Children's Hospital

A major event in our lives unfolded this month...We flew to Cincinnati for Evan's first appointment with Dr. Brenda Wong. We learned of Dr. Wong's "cutting edge" reputation among the Duchenne community, and decided (back in May) to schedule an appointment for a week long "base line" work up. She is in such great demand that we had to wait from May until October, to finally get in.

Though it would seem strange to say, it was a very positive experience. We would recommend Dr. Wong to any parent of a DMD child. Bill and I feel that Evan is now in the very best hands. For the first time, we felt comforted...surrounded by medical professionals who were up on the very latest research, meds, treatments, and strategies to slow DMD progression. During the week, we must have seen at least 15 doctors and other professionals. Our appointments were scheduled one after the other, and lasted the entire day for three days. Base line data were taken on every aspect of Evan that has been affected or will be affected by Duchenne. Every question we asked was answered. Dr. Wong even took time to talk to Billy, our 7 year old, to make sure he understood what was taking place, without unnecessary detail. In fact, most of the doctors included Billy, in one way or another, during the examinations. The staff at Cincinnati Children's Hospital are very definitely experts with children.

By the end of the week we knew some of the test results. Dr. Wong met with us to put it all into perspective. One of our concerns of course, was his heart. We know that it is a critical muscle that gradually weakens to the point of cardiac arrest in DMD children. Cardiologists found Evan's heart to be strong. They even used the term "normal". They said that they expect it to be that way well into his teens before signs of trouble will appear. The big concern right now is bone strength and density. He will start steroids in January. This is something that Bill and I were strongly opposed to early on. Side effects include stunted growth, roundness of the face, mood swings, weakend bones, cataracts, etc., none of which we wish for our child to experience. However, the advantage of steriods is the dramatic slow down of muscle degeneration. DMD boys on steriods are able to walk an extra 4-5 years. Steriods also help the heart to stay strong longer and will add precious years to his life. Dr. Wong said it best: "Steriods are bad but Duchenne is worse". We are now preparing for steroids with vitamin D3, plenty of calcium rich products, supplements, and lots of fruits and veggies. It is our dream that he will not have to be on steroids long before a cure is found.

At the appointments, Evan was so good. We were amazed to see how far he has come. I remember vividly, coming home from a doctor's appointment just this past May, wanting to cry because of the odd way he acted. At that May appointment, he was so upset he would not talk to anyone including me. He was so distrusting, he refused to stand on the scale and he would not let the doctor touch him, much less follow any direction. I could hardly converse with the Doctor because of the constant tantrum he was throwing. This was not the Evan I knew and it hurt so bad to see him present himself this way. The final blow was when the nurse asked me if he could talk. I wanted never to take him to another doctor's appointment. Now, only 6 months later, I saw him as brave little man who tried very hard to do what he was told, even though every inch of him wanted to run away from the situation. DEXA bone scans, Echocardiograms, EKGs, blood draws, urine tests, physical therapy...He was so good. He constantly asked to know what was coming next and then he would ask, "and then that's it?" More often than not, he didn't get the answer he wanted.

When the plane touched down for the last time, we all took turns saying things like "No more planes, no more hotels," and then Evan said "No more Doctors."

Not a minute passes that I don't wish for life to be different for Evan. He has all the desires of a normal 4 year old boy. Not only does he desire to run, he wants to race. He wants to climb... everything. But, he can't win a race. He can't even keep up with his brother and cousins when they are walking. He can't climb. He can only watch from the ground. If he does manage to climb up something, he sees a panicking mother running to him telling him he can't do that. I see the desire in his amazingly blue eyes and I wonder what he thinks about himself.

Evan will be 5 years old on December 31st, New Year's Eve. Time is not on our side. Duchenne progresses in his little body while he plays and while we watch him sleep. Please help us end this for Evan. Donate now.

On the fundrasing home front. We are continuing to send out letters to celebrities and recieve items for our spring auction. Bill is hosting a skateboarding fundraiser November 22nd called Suwannee Camp & Ramp Jam. The event is advertised on www.FloridaSkater.com. In December we will be hosting two screenings of Darius Goes West www.DariusGoesWest.org along with Rick and Lelia Ginder. Their website is www.HelpSaveDale.com . They are good people, living the same nightmare while sharing the same dream.