Anyone's son have an in frame duplication? How is your son doing and where is he at? We have duplications of 3-37, which should be reading in frame. Thanks!

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My grandson has 5 --13 exons missing. He does have a reading frame. Lucas is 13 now. This past year has grown harder for him. He does walk, but climbing stairs are virtually impossible, unless he crawls. He is getting so frustrated. He is on Deflazacort. Also taking 2.0mg. of growth hormone sub.q daily. And many more supplements. Although he has a great sense of humor. He is loved at school. Such a comedien. We watch everyday for utrophin studies, the Halo study, and anything we can hold on to. And of course many many prayers. I believe, with all my heart, that this terrible monster called Duchenne Muscular Dystrophy is going to be wiped out. They are so close to a great treatment for all our boys. I believe within the next 2 years there will be a treatment. And also the stem cell study has been approved to the next stage. This is rebuilding muscle. We will stay positive, keep raising money for studies, keep our boys healthy, and keep the faith. It is going to happen.  Bless you

Thanks Judy, we are newly dioagnosed so we are trying to figure out what all this means. Our MD said in frame duplications for the most part run a milder course, but whats the definition of "milder"? We hope that HALO comes through, I just discovered that company the other day. Like you said, we have to stay positive and keep the faith in modern medicine.

Best-

Andrea

So true. How old is your son? Our Lucas had a muscle biopsy when he was 4. It is the true test of the amount of dystrophin they have in their muscle. Lucas has less than 5%. This disease is so complicated. We have learned alot. But it takes a genius to really understand all aspects. Every child is so different. Dr. Brenda Wong of Cincinnati Children's Hospital is Lucas' Neurologist. Families seek her out. She is one of the top neuromuscular specialist in the USA. We are so blessed to live an hour away from the hospital. Families come from all over the country to see her. Where are you from? Good to hear from you Andrea. We will keep in touch. Maybe we can help each other through this journey. 

Andrea Miklus said:

Thanks Judy, we are newly dioagnosed so we are trying to figure out what all this means. Our MD said in frame duplications for the most part run a milder course, but whats the definition of "milder"? We hope that HALO comes through, I just discovered that company the other day. Like you said, we have to stay positive and keep the faith in modern medicine.

Best-

Andrea

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