cperki31

Hello all. I am new to the boards and have finally decided to post. My daughter, Sydney, was diagnosed with congenital MD, merosin positive, subtype unknown back in 2004 via muscle biopsy. She was a floppy baby, but did walk by 15 mos old. They told us she was mild, and her neurologist at the time, told me he didn't think she would lose the ability to walk. That bit of information has carried me mentally for years. She was just seen in the MDA clinic a couple weeks ago and is doing well. No physical therapy, walking good and running, climbing, swimming etc.. , She has some achilles tightness and will require night splints, but is not toe walking. She will turn 6 years old in a few weeks. She is a very happy and smart little girl who really doesn't think there is a thing wrong with her. She is weaker than other kids but continues to impress me and do more and more all the time. Thank God! Still, they do not know the cause of her MD and with all the advancements in science, I am left feeling scared and worried about how she can be cured (if gene therapy, etc.. works) if they do not know the cause. Of course, I tried to educate myself following the appointment, and went on the internet, which is something I have not allowed myself to do since the beginning of all of this. I scared myself to death, and keep trying to remind myself that the disease is so variable in everyone. I am looking for a ray of hope, someone that understands what I am going through. I just don't know what to anticipate for her future and am finding myself very scared right now. Thanks!