My husband Bob and I have been married for 10 years and have 3 wonderful children. Bobby (7) Lindsay (5) and William (2). I have lived in Omaha all my life and come from a large family.
About my family:
Bobby was diagnosed with DMD about a week after his 5th birthday when I was 6 months pregnant with William. I was confirmed to be a carrier matching Bobby's deletion of exons 45-46. We have not test William as I don't think we could take the news and we are hopeful he does not have DMD as he is so much stronger than Bobby at his age - he actually runs and jumps off things. Lindsay, our daughter, has not been tested for carrier status. At this point we feel like it should be her decision but should I develop heart issues, we will probably explore getting her tested. This last year, to prevent fatigue at school, Bobby got a scooter which has made him very happy and provided such independence. He has been on Prednisone since he was 5 and a half. He is on a weekly dose of Foxamax due to Osteoporosis. We were able to move out of our tri-level home to a ranch this past December which has been a godsend.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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My name is Anthony Stoops. We have two sons. Quinten, our oldest, is 8. He has DMD. Our younger son, Nate, is unaffected. We are always interested in meeting other families that are going through the same things we are. I saw your discussion on osteoporosis. We have Quinten on fosamax. His bone density has increased back to the normal range. We also have had to do a prescription for vitamin D. I hope your new house is going well. We moved from a two story to a ranch two years ago, and it has been wonderful. Take care and I hope to hear from you soon.
Yes we are staying at give kids the world. I think I'm more excited than my whole family. I'll have to talk to the nutritionist that will help out to. Thanks for giving me a heads up on the whole Osteoporosis thang that was great. Well gotta go do some more packing so talk to you later. Amanda
Hi Debbie, the doctor put Damien on a vitamin with calcium 600. The bottle says take 2 a day. So I give him 2 sometimes. I'm afraid of giving him to much though. I might just stick to 1 because he drinks tons of milk. Does your son have behavioral issues on the Prednisone? I signed my son up for Make A Wish and we are leaving for Walt Disney World on Saturday and will be back on Friday. ttyl Amanda
So you can find vitamins with extra calcium I never really thought about it. I also found bread with calcium to. My son has only been on prednisone since July and we found out a couple of weeks ago that he had osteoporosis back in August so I don't think it was the medicine. I haven't gotten my youngest tested either I just can't deal with the process either. My youngest is alot stronger than my oldest to. The doctor's at Riley children's hospital in Indianapolis Indiana told me not to worry about my youngest until he shows signs. I can totally understand. My husband get's mad at me because I'm very overly protective of Damien now. I can't help it. I just want this whole thing to go away. But if you ever need anybody to talk to I'm here I could use all the talking I can get that's for sure. Take Care Amanda
I was curious to see if you had your youngest tested yet? I hope the best out come possible for him. Our oldest was diagnosed in July and our youngest was just diagnosed a few weeks ago. I am not telling you this to bring you despair, I just wanted to let you know that I can understand what you are going through. I know you think you can't take any more bad news. But you will make it through. I promise it. If you need anything, someone to talk to, or just vent, contact me. My heart is with you during this time.
I am active with Advocating for our families and pushing congress to help our families. Do you know if your Senator or House member has signed on to support the MD Care Re-authorization Bill? We are still pushing for sign on's. It is the one thing I feel I can control with dmd and it is so critical to help our families. I believe it is here we can help speed up research and change the course of dmd sooner than later.