I am 38 years old and have been married for 15 (almost 16) years now. I work as a secretary/cashier at a local grocery store and have been there for 20 years. I found out in 2005 that I am a carrier for DMD.
About my family:
My husband is Rusty and we have 2 sons Kyle age 11 and Travis age 7 with DMD. Kyle is in the 6th grade and Travis is in the 2nd grade. They love baseball and video games.
Name(s) of child(ren)/individual(s) with Duchenne:
Kyle and Travis
Age(s) of child(ren)/individual(s) with Duchenne:
Comment Wall (5 comments)
You need to be a member of PPMD Community to add comments!
I am 36 and my boys are 14 and 16 and my children were diagnosed at 3 years and 5 years old. I was not aware I was a carrier and both of my boys are in powerchairs but attend regular schools with personal aides. My boys love video games and they have both played power soccer. Their health has been good. My oldest 16 is starting to lose his back muscles but we do everything preventive that we can. I have a daughter who may be a carrier and she is 15 with no issues other than being a teen-ager. My children are great. My daughter helps with her brothers and is a very strong little girl.
Sorry I have not returned your messages. My family (extended) have had some medical and personal situations that went through the holidays and up until now. Things seem to be settling down now a bit. Hope you and your family had a wonderful Holiday. Karen Jones
I am so glad you contacted me.
The boys are great, as I hope yours are too.
Our lives changed in July.
My oldest was diagnosed. Three weeks ago today my baby was diagnosed.
I am heartbroken and devastated. I see a psychiatrist as well as take medication to keep me saine at this point.
I try to love my kids as much as I can. I am at the point, where I won't let MD take the memories we will create while we are all here together.
I have a wonderful husband who holds me while I cry.
Despite all of this, I feel like a truly lucky woman to have my wonderful boys, my joys.
I hope your kids are well, I would love to hear from you.
We are in Ottawa, Canada. My husband is American, from Texas. He immigrated here three years ago. We have so much support here. We are 10 minutes away from the best Children's hospital in Canada. We also have a family support group. There are about 10 families from this area who take part. Other parents who could only imagine what we are going through.
I am also friends with the President of the Ottawa Chapter for Muscular Dystrophy Canada, and I am starting to volunteer for the next walk for MD.
We have to find a cure for this. I can't imagine loosing my boys. I am certain you feel the same way. You can truly understand what it is like to hear the devastating news twice. We are strong women. We will get through this. We will love our kids, and live day by day. And if you need to talk, or need anything. Please let me know.
Take care my dear friend. xoxo
Scott will be thirteen in October. He is still walking and pretty active. Scott has been taking deflazacort for three years along with a cocktail of supplements, ace inhibitor and metformin. He doesn't like taking so many pills and believe me I hate nagging him twice a day to take them. I do believe they have helped him and hope they continue to help. I have more bad days than he does. Have you ever tried bribery? (to help your son take his medicine). Maybe buy one of those pill crushers and sneak it in a small snack or a smoothie? I know it's difficult. We got to the point that we just tolld him that these pills help keep your muscles stay strong until a better treament. is available.
I really think that steroids, especially, deflazacort has helped Scott a great deal. Karen