thank you for writing me. i'm glad your daughter was able to get the results she needed w/out a biopsy. the dr.'s realy left us believing that was our only option. i too was extremely nervous. not so much of Deacon being in pain as having my baby put to sleep. unfortunately i had no where to turn for advice then only prayer. and of course you feel you should do what your your dr. suggests, they no much more than i do. on the bright side deacon never made any complaints about pain. he's an amazing little man. we never had anything mentioned to us about dna testing. honestly i hadn't heard much if anything about it untill i found ppmd. thanks again for writing me and sharing your thoughts,it's great to have people to talk to. alicia
We have something else in common...I had breast cancer too. It was a "bump in the road" compared to Nicholas' diagnosis. This has shaken me to the core but I continue to thank God every day for loaning us this little guy.
We're heading down to New Iberia in a few weeks for a family wedding. I love South LA ....the people, the food, the parties...it doesn't get any better. I don't post a lot on PPMD but I'm on the site often to gather as much info. as possible. When I took Nicholas to therapy last week, I met another mother whose son was recently diagnosed w/ DMD. I had seen his picture on this web site and we exchanged information. I'm so glad we have this site to communicate with each other.
Jacob was diagnosed on Feb. 20, 2007. He will be 8 on July 14th. When he was first diagnosed we took him to Children's in Philadelphia but then we heard such good things about Dr. Wong that my daughter and I took him there last summer and my son-in-law took him there last February. They are wonderful out there and they are very organized which Children's in Phila isn't but it's hard to get him out there for his visits so we have decided for now to just take him to CHOP. We just make sure we stay on top of things with everyone involved.
Jacob has a deletion of exons 42 and 43. He's been on deflaxacort now since Sept of last year and has been doing well. He can go up steps with only using one hand on the rail and all of his timed trials improved at his last visit in CHOP last month.
We are forunate in that he loves salads and fruit and so he has not gained any weight.
If I can be of any help to you don't hesitate to ask:)
Marla, If you live close to Rhi we figured we are about 45min away. We live in Hahnville, by Luling. My parents live about 25 min from me in River Ridge. So maybe we can all get together soon. Wyatt was diagnosed when he was 14 months old, about 9 months ago. We found out by accident he was having some other issues and a doc ran a CPK level which was 20,000!!! Keep in touch. You know we are like family here in the south.
Hello< Cade was diagnosed last week. We never really suspected this, It was alwas an autistic disorder with hom. He is very slow however in all of his gross motor skills. No one ever said anything about muscular dystrophy until an extensive blood work revealed a 18000 CPK level. I hope god comes together and brings us a cure for all of our angels that are suffering. Thank you for your support and comfort...Amanda
Thank you for the offer of prayer support, it's always welcome. Kenny was diagnosed just two weeks before his 5th birthday. He was a happy kid who enjoyed life and loved being surrounded by family and friends. Thanks for viewing his pictures. I wish you and your Grandson all the best. Take care.
I lived in North Louisiana in elem. & high school and I'm a LSU alumni along with my Dad and both my sons. Both my daughter-in-laws are from South Louisiana and I couldn't love these girls more if they were my very own. I think Erin & Rhiannon have been in touch on this board already. You have a beautiful family. Hope to chat with you again.