Evan turned 5 years old New Years Day. When I asked what he wanted on his cake, he replied "I want the Titanic crashing into an Ice Burg". Despite my hopes that it would be something I could find on the local baker's menu, the cake turned out awesome and his father takes full credit for making that request come true.

Dad also takes credit for the sandbox volcano. It seems that baking soda and vinegar just didn't suffice so he had to use explosives ( aka fireworks). Evan, in red, was in total awe on his big day!

This month Evan started taking steroids. There was a time when we were so appalled by the side effects that we could not ever see giving steroids to Evan. After learning that research shows steroids significantly improve muscle strength and can add 4-6 years of walking to Evan's life, and possibly increase his overall quality of life and lifespan, we really felt we had no choice if we wanted him to live long enough for a cure to be found. We are using Deflazacort. It has to be ordered from the UK. It is reported to have less severe side effects than prednisone, which is offered in the US. So far, we haven't noticed any personality changes or increased physical strength. Dr. Wong said that his strength will slowly increase in the next 4-6 months. It's a very serious drug to give a five year old. Bill and I were quite shaken when we gave him his first dose.

Evan is becoming more aware of the physical differences between him and his pre-k classmates. We know we have to give him some reason but we are having a difficult time deciding exactly what to say. Up until now, I have just dismissed everything with, " You're just too little yet". He's five now and too smart for that to work. The most difficult part for me will be trying to talk to him with out conveying any sadness in my tone or face. To make it more difficult, Evan was born with the uncanny genetic ability to excel at physical coordination. He could catch and throw a ball at 3 (even one handed throws) accurately hitting his target. He has the balance and coordination of a pro skater and the fearless desire to do extreme sports. But his body is betraying him. I watch him running excitedly to the playground, his little body vibrating with excitement as his eyes survey the equipment and his imagination places him in all the possibilities offered.

We believe in the possibility that a cure will save his dreams, which is why we continue to immerse ourselves in fundraising. This December, we hosted two screenings of the independent film, "Darius Goes West". The screenings were a combined effort of both Rick and Lelia Ginder and ourselves. They were held at the "Priest Theater" in High Springs, and the "PK Yonge" auditorium, located on the University of Florida campus, in Gainesville. The Ginders also have a 6 year old son, Dale, with DMD. They live in Gainesville, and had the contacts to make it a huge success. Together the screenings brought in $37,000.00 to research, through "Charley's Fund", another non-profit parent founded DMD organization.

Many people helped us make these screenings possible. Janice, owner of the Priest Theater, comes to my miy mind first. She took this on with all her heart. We had never met, before approaching her about using the theater to do a fundraiser. She made this event possible. She contacted the newspaper editor, and got us an article in the High Springs Herald. Her contact with Karst Productions brought in free tech support, donating and setting up the projection equipment (the Theater is only equipped to run 35mm format films). Janice passed out flyers and didn't charge is a dime for having to close down her businesss for one weekend. Then there was Mystery. She is the manger of Floyd's Diner. We literally walked in off the street as strangers, asked her to donate a dinner to the 12 Darius crew members that were to attend the screenings. She didn't hesitate to say "yes". She even opened the restaurant on a day that it was normally closed, to host the crew of 12.

Before this event unfolded in our lives, asking for donations of anything was a foreign concept. We are so amazed and appreciative to those people who have helped along the way.