I am a devoted mother that aches over Brandon's condition. But we try and stay positive and look at what we have! I enjoy working out and would love to meet other mothers in my area with sons that have DMD.
About my family:
We are a loving family, praying and awaiting curable treatments!
Name(s) of child(ren)/individual(s) with Duchenne:
My name is Ron Kohudic. I work at Siren Interactive, a digital agency in Chicago that is focused on understanding the needs of patients and physicians dealing with rare diseases. I am part of a small group that is doing research in order to develop new technology to help boys with DMD and their parents, caregivers and health care professionals within the community.
Please let us know if you would be willing to speak with one of my colleagues or I in order to help us better understand DMD from your perspective, as well as to better understand your needs or any specific areas that we could potentially assist you in treating boys with DMD.
Please let me know if we can contact you at your convenience.
Thank you for your time and cooperation in this effort.
I searched homeschooling on here and came up a few comments from you where you mentioned homeschooling your son. Are you still homeschooling? I'd love to ask you some questions if you don't mind, it's something I'm considering for my son.
I can understand lightening striking twice. Nixon was diagnosed with Diabetes about 4 years ago. When the doctor told me he has diabetes, my exact words were, "But he already has something!" My other two boys are as healthy as can be, which is great and unfair at the same time. We tried private school and that was a big mess. We started public school in 1st grade. Except for one very bad teacher, we've been very lucky. Nixon actually has the same teacher this year as last so that's good. Nixon has a hard time with learning. Does Brandon? We have got to get together because you have to tell me all about home schooling.
I do not homeschool yet. Nixon is going into 5th grade. He's done well at his current school but the middle school he'll go to next year is awful and it will be alot of kids he doesn't know so most likely I will homeschool. Do you homeschool? We are very active in Boy Scouts so that has helped Nixon make friends but mostly the other boys do their own thing and Nixon does his. It is really sad and distressing. I would LOVE to get the boys together. Nixon is shy at first but over time, I think he'd open up. What doctor does your son see?
Sorry it took me so long to respond...Blake went to Canine Assistants camp this summer, and we met another boy from Dacula with DMD. If you would like to email me, I can connect you with his mom - they are a really sweet family. Her son and Blake both ended up going to DMD camp a couple of weeks ago. And we'd love to meet you all sometime! I will send you a private message with my email.