I've been involved with PPMD for over a year now and it has been the best thing for me, my son Ryan, and our family. They are an amazing group!! Ryan is now 15 year's old and is a freshman in high school. Although his disease is very frustrating for him at times, it is not stopping him from setting and working towards his goals, and living LIFE.
About my family:
My husband's name is Jeff. I have a 19-year-old step-daughter named Jade. And Ryan is 15 years old. We have a 8-year-old crazy labrador retriever, Koda, who Ryan just loves. We also have a bearded dragon lizard named Rocky. Ryan was diagnosed at 3 years old. He is doing very well.
Name(s) of child(ren)/individual(s) with Duchenne:
HI Linda. My son attended the OC MDA Camp this summer. I am trying to meet families to share experiences and answer question. Unfortunately, I haven't had any needs met by my Neurologist at Loma Linda, and even the MDA wasn't present at our last appointment. My son's strength is declining steadily and I am trying to prepare myself for the next step. Everything I know as a parent has been changed to accomadate my son. I hope you'll come to visit our page at LIVING WITH DUCHENNES MUSCULAR DYSTROPHY on Facebook. My name is Mark Perrotte. I have to be honest, I was very displeased with certain things this past year, some of them dealing with the MDA of Orange County. There are just no resources for families out in the Palm Springs area, and we just struggle to afford to commute to O.C. when we need help. Thanks for listening..Hugs to your son..Mark