My husband Jason did tell me he met another family with a 6 year old, but he couldn't remember your names, so I'm glad you followed up! We actually have 3 sons with DMD, Max, the one you met yesterday is the oldest. Then we have Rowen, 3 and Charlie, 14 months. Then we also have Lexi,10 and Chance, 4. We are pretty busy, but love having a big family.
I see you friended me on Facebook too, I look forward to getting to know you better!
Thanks Jessica. I'm sorry you had a bad week. Hang on in there though, our sons are only little and I feel sure that effective treatment is coming. Am I correct in thinking that you need exon 51 skipped? If so, this is the same as for my little boy. Even if it only works to slow down the illness for a while, it buys us very valuable time for some of the other research projects top come to fruition.
If you ever feel like emailing me outside of PPMD, my direct email address is email@example.com.
The families I spoke to when I first found out were Sophie Smitzel and her son is Logan. They live in Aurora. He will be 11 this year and she is very very involved with MDA. She also told me to go to PPMD website to get other answers. I first spoke to Chris Hyatt. Her son LIam is probably 8 or 9 this year and live in Sandwich I believe now. She and her husband are extremely funny and she was so very helpful to me when I had a ton of questions.
It would be great to meet with you and Ben. I know Nicolas would love to meet Ben.
It shouldn't take you too long to get in to see Dr. Wong. It wound up taking me only 3 months when I first found out. It's exhausting to go there for 2 day long visits, but I always feel like I'm accomplishing something by seeing her and her team. Plus, it becomes a mini vacation for us!!
Wow, that is close! I work in Oswego, and my son goes to Boulder Hill Elementary! First off, I am so sorry to hear about your son's diagnosis. One very good thing though is that he would totally qualify for the exon skipping trials. We see Dr. Wong in Cincinnati and she will be conducting the exon skipping for Prosensa. I have also put Nicolas on the list for the trials with Dr. Mendels study group for the AVI exon skipping trial. Dr. Mendel is one of the leading researchers for MDA and is in Columbus Ohio, so whichever trial comes first (AVI was supposed to start in March but has been put off for a bit) - we'll be there!!
It would be great to keep in touch with you since you are so close!! Have you spoken to any other families in the area? By the way, Ben is absolutely BEAUTIFUL!!