"Hello. I have a daughter called Libby who was diagnosed last year as a manifestering carrier of muscular dystropy. We have recently got her DNA blood tests back which indicate she is missing exons 51-55 (whatever that means - I am still trying to…"
Sorry I didn't get back to you sooner. I'm just reading tonight.
Did you get the results of Kaitlyn's x inactivation?
My daughter Alice is 11 this year and is definitely gaining strength. She got her training…"
My name is Alexandria (Ally) Bridwell. I am now three years old. I have Duchenne Muscular Dystrophy. My actual diagnosis is dystrophin plus syndrome (since I have DMD "plus" three other conditions). Right now, I am learning to take steps with some assistance. I am also learning to crawl. I started preschool last week, and I am adjusting well to it. I love to swing outside, go for stroller rides, and play with my brother.
About my family:
My dad's name is Scott, my mom's name is Kim and I have a younger brother, Dax. He is one and a half years old.
Name(s) of child(ren)/individual(s) with Duchenne:
I can't imagine it either, the pain that Jeff and Andrea must be experiencing. I just want to reach out to them and do something to help them through it but I know there is probably nothing one can really do to ease that pain. It's something only God can do. I wanted to go to the Memorial Service yesterday but I had to work.
hey ally..it is jane clark. i hope you are doing well. tell your mom and dad i said hello. you are never far from my mind. i pray for you and your family every night. tell dax hello too!!! i am accumulating lots of stuff for our silent auction in october. i will never stop working to try and find the cure for this disease you and my nephews and so many others have. it was nice to see you on my friends list.....see you soon i hope.......jane clark
You are a beautiful little girl!! You must make your mommy and daddy very proud. My son, Mathieu is 7 and he has DMD. His baby brother may have it as well. I will make sure I show them your picture and show them how brave and beautiful you are!! My Malaky is 2...he is very cute..who knows...:)
Well, I'm not sure who your mother in law is, but my dad was from McLeansboro. His mother was Emma French. So my mom and dad talked to your mother in law I guess. I'll have to ask my dad how we are related! You're right.... it is a small world!!!
Hope Ally is doing good, she sure is a cutie!!! I'm sure with her and your little Dax, they are keeping you very busy!!!
Hi Ally- You don't know us, but my mom and dad just saw you at a family reunion. My son, Brady has dmd, is 15 years old and has two brothers! I thought it was so odd that last night was my first time here and I signed up. I saw you were from McLeansboro and thought it was kinda funny because my parents were there for the reunion. We are from up north, near the Quad Cities!!! I think my mom talk to Ally's grandma!!! Hope all is going well!!!
Your distance relative------Dee Jenkins
Hi Ally...I know quite a few girls with DMD...and if you like i can try to get in contact with them to get in touch with you. One is an adult who lives in Arizona. One is now a teenager and is in Ok, and one is in Alabama too. I can tell them about this group so you all can be in contact. We know how rare it is but it may not be as rare as some think. I'm glad your here and know many are here to support you the best we can.
I have a deletion of exon 50
I am currently taking steroids, calcium supplements, green tea extract, multivitamin and my heart medication.
My doctors say I have a milder form of duchenne than boys do.
I'm 18 && I still walk, I use a scooter for summer camp & shopping trips because i get fatigued.
The only type of assistance i need is getting up from low surfaces, for the most part i am independent, there are of course sometimes when my legs do not want to work and that is when i need help getting up from the bathroom and stuff like that.
I get muscle cramps every now and then, i have learned how to deal with those.