Keelan was diagnosed with Duchenne in December 08. He's 3 yrs. and has developmental delays, it was found by accident when they took a Celiac and other blood tests to see why his growth was slowing. I am not a carrier and we have no family history. Keelan is skipping exons 42-46. I work as a landscaper.
About my family:
My husband Dave works as a web developer. My children are Ella (5 yrs) and Keelan. Ella is in Kindergarten and Keelan is attending an integrated pre-school.
Name(s) of child(ren)/individual(s) with Duchenne:
i just read ur blog about the 12/8 Dx date - ours was Xmas Eve last yr - as you know it was a brutally devastating time. My hubby & I practically died for the 1st few months... we were like the walking dead, it was sooo sad BUT since that time MUCH good has occured. So we are thankful for our faith &family that are helping us w/ Levi (3) - Make great memories this hoilday xoxoxo perlita
We got confirmation of Gus's MD only 10 days ago - 2 weeks after I finished treatment for breast cancer.....if you can believe it. Life has been fairly cruel lately,but I still try to count my blessings.
My husband and I are both teachers and very much wanting to learn all we can about Duchenne, research, clinical trials etc.....so far this discussion board has been great!
Thanks so much for your comment, I just said to a friend that I was so excited to get the article out there--I think I was expecting a a flood of money to come pouring in and a bunch of inquiries from people that wanted to help and I didn't and the whole thing was kind of anti-climatic! I guess that means I have to just keep on plugging! So, Thank you very much, your comment, it made my day! Haverhill is not that far from us--I would love to keep in touch with you, if you would like. My e-mail is email@example.com
hi Keelan sounds alot like jack very small for his age and slow to sit up and roll.He has times when he is very tired and goes off his food. we also knew he had a high liver enzime. it took a while to get on the rigth track,one doctor forgot to do a CK test. they did a liver biopsy and then started looking at his muscles, did a muscle biopsy and came back 7 week later with duchenne. We live 700 ks from nearest main hospital we went every month for 12 moths til we got our anwser and then they tested me!! i am a carrier and we have been offered genetic IVF to have our next child. thanks for chatting its amazing how much better its made me feel. is Keelan on his feet? jack had lot of trouble sitting up! We live a fair way NSW do your friends have a child with duchenne??
hey kathy just read on moms cafe my son jack is always biting his hand been a bit worried jack is 3 found out just a week after 2nd birthday dear jack didnt get on his feet til 2 and half. i was thinking its never going to happen.he would bum shuffle alot hey how did event go?
Hi everyone! I just posted an event for Beat Duchenne, our fundraiser at the Saugs/Everett Elks, in Saugus, MA on 10/3/09. It's a day of music, family fun, food, and raffles. Check out www.beatduchenne.org for details! Hope to see you all there!