My oldest child, Tyler, affected by DMD, passed away during a routine surgery due to complications with anesthesia at age 7 on 6/26/06. I have a son, Spencer, nearly 12 (dob 8/9/01) who is affected by DMD and a daughter, Delaney, nearly 7 (dob 6/4/06). I am married
Name(s) of child(ren)/individual(s) with Duchenne:
I was thinking about your family just the other day. I think of Tyler often. Hope all is going well for you. Are you planning on being at the Disney marathon in January? I know my boys would love to se Spencer again.
I rec. a message that you sent a greeting to Kelly in Freehold,NY. Is that Upstate NY? I don't know why I was notified in my E-mail of your message. If it is Freehold, In Upstate Ny, I am very close to that area and also have a son w/dmd. How do I reach Kelly? I tried to search but did not get a response. Thanks.
Good to hear from you. I hope you all had a great summer and the transition back to school has been easy. If I can find the funding to go to the conference, I'm hoping to go too. Heard it may be in Atlanta. We'll also be in the middle of ptc trial. Lots going on. Joanne
My boys Jared 9 and Calvin 12 have deletion on 3-7. They are doing really well. I have a family history of it. My uncle lived to be 39 and I had 2 first cousins who lived into their 40's.
It seems like when this end of the gene is affected the symtoms are milder. How is Spencer doing?
My son was just diagnosed last week and they told me he had deletions in exons 3 to 7, I haven't seen to many postings with these numbers. Your son's numbers are the closest to my son's that I have seen.
Do you know what the numbers mean, is there a difference on where the deletions are? I was told my son who is 8 has what they call intermediate, between Duchenne and Beckers. It's all so confusing.
So sorry about your son.
Hi Nicole Just wanted to get in touch with you. I was looking for you at the conference since we are relatively close to each other. I can use any advice suggestions that you have to give me. Thank you Rosalie