I am a single mother of a beautiful 5 yrs old who has just been diagnosed with Duchenne Muscular Dystrophy. I feel like my world has been turned upside down and now am completely obsessed with learning all there is to know about this disease. I am very interested in supporting and receiving support from others who are dealing with this disease and hopefully live in San Diego where we reside.
About my family:
My 5 yrs old, Nathan has just been diagnosed with Duchenne. I have a 14 yr old boy who does not have the disease. Nathan's father is still an active roll in his life, but we have been divorced for 2 years. Nathan also has 2 sisters from his father who are 15 and 18.
Nathan was diagnosed with "bowed tibias" when he was 3...that was supposedly why he waddled. His ortho wanted to do surgery this June but I didn't feel quite right about it. I was noticing more and more his problems with his strength...couldn't run or jump, hard time getting up from the ground, hard time getting up steps, and forget about how many times he falls! He had a really rough time adjusting to preschool and would just stand there and watch the other kids play on the playground....it literally broke my heart! I adressed my concerns with his primary...again! He finally sent me to a neurologist who diagnosed him on June 6th with Duchenne Muscular Dystrophy, Worst day of my life! Needless to say the ortho didn't get to do the surgery he was so anxious about doing, that would have only made Nathan's condition worse!!
Name(s) of child(ren)/individual(s) with Duchenne:
Shanna I got a scholarship from a group here We have no money either. I will share everything with you. next year we will try to get you to go my dau is the nurse at valla. and we are right across from the golf course.lets try to get together after I get back. we have a nice water park up the road and the kids could play while we talk I have older ones who could watch them. talk later Penny
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Shanna You didnot call what are the Drs saying about what Nathan has? Im interested in hearing. hope your holidays were good. waiting to hear. Penny