Mom of 2 wonderful boys. Jackson 8 and Ayden 6. They are my sunshine, my sweet treats, my everything. I have a very busy but very flexible career as an insurance consultant here in the DFW metro. I lead a very active lifestyle with my boys but also personally. Keeping in good health is very important to me. I love hiking, cycling, paddling, running, and just being outdoors with my boys and playing.
About my family:
We lead a busy life with school, work, and family. The boys spend half of their time with me and half of their time with their Dad. We are divorced for 3 years now but work very much as a team when it comes to raising and supporting the boys.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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Hi Lorrie - I'm sorry to meet this way. Our son Sam was diagnosed almost 6 yrs ago. The time right after his diagnosis was the hardest, so i know it is a tough time right now. We have found a great community within PPMD and know a number of other families around the Dallas area. Stefanie helps Debbie coordinate the Dallas Faces group that meets every couple of months. We all call Debbe "Dr. Debbie" because she knows so much. We were at the PPMD conference earlier this month as well, We've been to 6 conferences now, and there is so much positive research news compared to our first one. We'd be happy to help connect you with some of the other local families - send me an email at email@example.com or stefanie at firstname.lastname@example.org.
No, we were not involved in any other phase of this trial, and this is the first time we are eligible for a trial, for one reason or another of the criteria. I have been bugging our DMD neurologist for about 2 years when I read about it being tested in the Netherlands and Britain. This drug will hopefully skip exon 51, which could potentially help 13-18% of the Duchenne boys. And if effective, then they will get working on other exon skips and duplications, some of which are already in the pipe-line. I just hope it's not too late to actually help my boy (11 years old) and all the older boys. The doctor in charge of the trial here in Montreal (Dr. D'Anjou, Ste-Justine hospital) said that there is "no pressure" to participate, but he doesn't realize the struggle against time that we Duchenne parents and boys fight on a daily basis, that it's time that pressures us most.
Anyway, this would help buy time until an actual cure can be found.
We won't start until late August or Sept now, while they recruit the boys and the staff needed, and once summer vacations are finished.
Let me know if you have any other questions.
It sounds like you have a lively and lovely little family. I may have some questions for you about how you juggle the shared parenting issue. As our house will be undergoing renos soon to be more accessible, so if we separated then I think we would need to have the kids stay in the house and the parents would need to alternate who stays at the adapted house with them. DMD complicates the issues again!