On May 15, 1998 we had an appointment at the Muscle Clinic at Children's Hospital to receive Jack's diagnosis. I actually felt sorry for the doctor who had to give us the news. We knew in our hearts what was coming, but that didn't make it any easier to hear. I guess no matter how many years you've practiced medicine, or how many times you've had to give bad news, it just never gets any easier to tell a parent that their child has a disease that will probably cause his death in the first 2 years. He told us Jack's test showed he had the deletions - he had SMA, probably Type I.
Nothing in our lives would ever be the same. We felt so incredibly alone--but we weren't. After leaving us alone for a while, the doctors walked in with a walked a woman, her husband, and their baby. The doctors said "we thought you might like to meet the Meyers - their baby has SMA as well."
Kristen, Gary and Noah were also in Clinic that day to receive the same diagnosis. Noah was just one month younger than Jack. We both had older boys who were almost the same age. The doctors, in their wisdom, realized that our two families would be more helpful to each other than anything they could possibly say. We've been close ever since.
Jack and Noah battled SMA differently, but the support we were able to give each other was tremendous. Probably the hardest part for us all, was knowing that one of our boys would go before the other. Jack died in July, Noah in September. Now we support each other through a different part of the journey, and try, as best we can, to support other families facing the same struggles.
One day when the boys were still with us, we got together and took pictures. In one picture they were laying on the floor next to each other, but Matthew realized that if you turned the picture on it's side, it looked like Jack and Noah were dancing. Well, we believe they are dancing now.
(Jack and Noah Dancing)
(Debbie and Kristen at Gary's Birthday Party)
(Debbie and Kristen at Super Allie
Bowlathon Fundraiser Party with