I've been depressed too. Kendall was confirmed as a carrier. We don't know how this is going to affect her. We saw our neuromuscular doc last week and she did not want to start Logan on steroids, especially not Deflazacort! I'm really going to try to get Logan to Cincinnati by the end of the year. How long did it take for Brogan to get his appt? I'll going to start taking antidepressants to help me function better. I forgot to ask that question at the conference. How many of you are on AD or how many want to be! Take care, Diana
We were also just in Placencia and stayed at a hotel with a bar, I can't remeber the name, it had Cozy or Comfort in it. Also, my nephew works for Francis Ford Coppola at Turtle Inn in Placencia. He goes there from Cristo Rey because they pay better there. Boy, it is a small world and although it is an unfortunate reason that we meet, I'm glad we did. Thanks, Michelle
It was so nice to meet you at the conf. I am always trying to connect to other families it is great to put a face to a name. Hope everyone is well. Yours kids are soo cute. Talk to you soon.
I will make it to the conf. next year, we just happened to already be gone on vacation for 2 weeks this month, so we couldn't work it out. Is the conf. in Cincinnati next year? I thought I heard that. Also, I'll ask Henry, he knows a lot of people in Belize, as he didn't leave there until almost 30 years old, when we go married. I do hope to hear a lot from the conf. when they put it on here. I hope to meet next year. What area is your Belizean family from? Michelle
I'm really glad I got to meet you! I appreciated being able to talk to someone that is going thru what I'm experiencing. Please keep in touch. You are a beautiful person with a gorgeous family. Diana
It was GREAT meeting you at the conference! I was born in New Orleans and grew up on the Northshore but have been in Austin for 8 years. Just hearing that accent made me want to go back to Louisiana--I could have listened to you talk all night!
I'm so glad you found PPMD and made it to the conference so soon. I am even more convinced that treatments and a cure are just around the corner. Hang in there- it's gonna get better :)
Wow, we just returned Monday from a 2 week trip to Belize. My husband's family is from Cristo Rey Village, near San Ignacio, Cayo. My kids look most like daddy, not me at all. I do hope to keep in touch, thanks for contacting me. Our sons are the same age and of course we have the same first name. We are a lot alike. Take care for now. Michelle
What a beautiful family you have!! I wanted to comment on the PGD/IVF, we too want more children. I am an obligate carrier of DMD. My son is 2 and my daughter is 3 1/2 and is also a carrier. We are currently in the process of PGD/IVF. A laboratory in New Jersey called Reprogenetics build us a probe to be able to test each embryo to see if the boys have DMD or not and if the girls are carriers or not. It takes about 12 weeks or more to build with a 99% accuracy rate. You will need to find a fertility clinic that does PGD, not all of them do. Anyway, I just wanted to pass on a little information from a couple of other Mothers of DMD boys that had success with PGD/IVF. Both of them are not DNA carriers, but it's in their eggs. Both of them were told that there maybe something like a 10 percent chance that they would have another baby with DMD or carrier DMD. When it came down to it, one of the Mom's had 15 percent of her eggs effected and the other had 75 percent of her eggs effected. Both seemed very frustrated by the genetic counselors because they both were told they had a small chance of passing it on again, but it can be different for everybody. Anyway, I just thought I would share that. DMD is very strong in my family, but none of us really knew that. I did have a cousin with DMD, but it was a long time ago and when it came to me and my sister having kids, we didn't have any samples of blood or tissue from my cousin and they told us without knowing where to look they couldn't tell us for sure we were carriers or not. Anyway, I don't even know if we were told the right information, but honestly at the time we didn't know what to do. The genetic counselors told us that it could have just popped up because they were no other cases in my family and in fact my GrandMother had five brothers all fine. We think it came from her so she was a carrier and she passed it on to her two girls and my Aunt had Mark who had DMD and then my Mom just had me and my sister my sister just had a daughter then I had a daughter and then I had a boy. I've been told many times that I have a 50/50 chance of passing it on, but that is not the way it's happened in my family. We all either are carriers or the only 2 boys born since my GrandMother have DMD. The only person it has missed it my 10 year old neice. Anyway, I don't know if any of this helps, but just info to think about. I certainly have no judgement on how anyone goes about things. Everyone is different and would choose different routes. Tonya :-)
Hey Michelle! I'm Rhi's mom and I've heard so much about you. All of us that live in close vicinity need to get together soon. Maybe after the conference we can contact all those in LA and see when would be the right time for all. Your boys are little cutie patooties!
Hi Michelle, I live not far from you. What a small world. My mom and her family are from Chalmette. None of them live there anymore since Katrina though. Wyatt was diagnosed last year on Halloween, he was 14 months old. He is going to be 2 in August. It's nice to "meet" you. Keep in touch.
Yeah!!!! You are here! Now I can drive you crazy sending messages when we can't talk on the phone! Hey, don't forget to either add pictures of Brogan on here or email them to me so I can put him in my slide show.