Hi Erin! I see that you have been on this forum for a long time, but I will still write. My son also has a duplication of 2-7 exons. As it turned out, this is a very rare mutation. Can I contact you somehow?
Hi Erin, your son is beautiful, and it gives a great deal of hope to hear about your brother using a cane at 23. You are a strong bunch of people, and wish I was closer to meet your little guy. (I am in Ottawa Canada) we have snow for goodness sake. My 7 year old was diagnosed in July with DMD, doctors say my other son 18 months old may have BMD...He had his DNA test today, can't say i am not scared shitless for the call eh!! Good luck and God bless ya dear!!!
It would be great to meet you and the boys!
I live in the Pittsburgh area and have a son 6 with DMD. I've been in touch with another family in the area as well and we try to get the boys together a few times a year..are you going to volunteer on Labor day at the Mall? Good to find you! Stay in touch. This is my first time posting on the new community site..so may take me time to figure out how to obtain your return message and write back..What part of Pgh are you from?
Hi Erin, my son Wyatt just turned two. Your description of Riley sounds just like Wyatt. He has trouble going up steps and can't jump, even though he is really trying. Keep in touch. It is always nice to talk to someone who has a young one and is in the same boat.