"It just sucks. I have both a 6 year old and a 10 year old with DMD. We recently moved to a ranch house because my 10 year old could no longer go up the stairs. We are now battling insurance to get his wheelchair approved. He still can walk some, but…"
I am 40 years old and live in Fredericksburg, Virginia. I am originally from the Finger Lakes region in Upstate New York (Newark, NY).
I am a kindergarten teacher and work at the same school my children attend.
I love reading, a glass of wine (or 2!), camping, cooking, and spending time outside.
About my family:
My husband's name is Matt is he is from Pennsylvania. We have two children. Tyler is 11 years old and can be quite a handful! He LOVES riding his ATV. My daughter, Madison, is 7 and she is very creative and "spunky". I picture Hollywood in her future! She also loves gymnastics and can often be found flipping around our house.
Name(s) of child(ren)/individual(s) with Duchenne:
Tyler Joseph Fry
Age(s) of child(ren)/individual(s) with Duchenne:
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My name is Sarah and I also live in Fredericksburg, VA. The picture is of my son Mason who is 14. I think we need to start a moms group here in the area. I am a part of a group further North but it can be a pain to drive. What do you think? We could possibly get together one night a month to talk and share our stories and also to bond. Let me know? Are you a part of the MDA in DC or in Richmond?
I grew up in NOVA and went to Mary Washington, then lived in Fredericksburg for several year afterward. Now living in Boston, and my son Jake (3) has DMD. If we ever get back down that way it's good to know there's good Duchenne care in the area!
I was rereading some previous entries and you mentioned wanting to get a scooter. Have you considered asking the MDA to look in their "loaner" closet? They have a loaner storage place here in Ca and it's loaded with used scooters they will lend out for how long you need. That's what we did, no cost to anyone. Next time we need an "upgrade" for when Alexander out grows it I might do the same thing.
I lived in Gloucester Va. I have a sister that lives in Fredricksburg, Va. It is a nice place but very busy to me. We moved to Texas almost 3 years ago. I also know Dr. Leshner he is a great Doc. Tell him my family said Hi.
I used to live in Fort Belvoir, VA. Dr. Leshner used to my sons' doc as well and I must tell you, you are in excellent hands! (I'm sure you know that by now, but I thought I'd throw that in) The MDA Clinic there is the best MDA Clinic we've ever been to. (We've been to four)