That was before . . .

It's been a year today since Connor's diagnosis and it still feels like yesterday. So much makes sense now that we know he has a fatal muscle disease known as DMD (Duchenne Muscular Dystrophy). This is Connor when he was about 9 months old. I vividly remember having to hold his legs down in order for him to sit up straight since he kept falling back. He just didn't have the strength or balance. I remember thinking it was odd. We called him a "watcher" since he wasn't very chatty either. He was behind in a lot of developmental milestones as well as fatigued easily. I also remember when he was about two when he was trying to play in the snow and he couldn't even stand long enough to get his balance. Of course his delays and lack of strength make sense now.

While updating all the frames in our house (Jon says it looks like a museum), I find myself looking through other old photos as well. It's fun seeing the kids growing up but there is always a "that was before" sting to them. In time that will become less significant but the diagnosis is still quite fresh. We have done all the medical preparation including finding an incredible specialist in Cincinnati, Dr. Wong. We hope to be able to continue seeing her as the difficulties of travelling (cost, schedule, kids) makes it more difficult. We have Connor's stretching regiment, his Speech, Occupational, Physical, and Hydro Therapy scheduled weekly (Jon and his therapists are unbelievable with this schedule--I don't know how they do it). Not to forget about all the wonderful babysitters we have found. And now our job as parents is to advocate. Advocate for Connor as well as all the other boys (and sometimes girls) about DMD.

Many of you have probably heard of Muscular Dystrophy but have not heard of Duchenne until Connor. We certainly hadn't. Duchenne is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Connor is just one out of 20,000 newly diagnosed boys worldwide. Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Duchenne results in progressive loss of strength where weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation which is what happened with Connor. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne. (Excerpts taken from Parent Project Muscular Dystrophy site: http://www.parentprojectmd.org/.)

This is a recent photo of Connor (at 3 1/2). He still has that melting smile and big blue eyes. He is such an amazing and wonderful son and will forever have a special place in our hearts. And there really isn't anything in the world like a Connor Hug! He's made great progress in his speech and developmental delays and we can now have conversations with him on occasion. We are still dealing with some behavioral issues which will just take time but he's shown remarkable progress.

We are working on putting together an annual fundraiser for Connor's Crusaders (thank you so much to the people who have already donated to Aunt Dawn's weight loss challenge). This is due to the increased financial commitment due to DMD such as his eventual wheelchair, van and home modifications. For any suggestions, please let us know as we would love to hear ideas.

Thank you all for the continued support! And like everyone, we (especially Connor and the other kids) have our good days and bad. For those bad days, just give us a hug. All our love and thanks!

Jon, Kira, and Connor (including Liam, Declan, Keely and even Guinness)