I have two children, both of whom have DMD. I grew up in rural Sebeka, Minnesota. I am employed as a registered nurse and currently live with my family near Gully, Minnesota. My children continue to do very well despite their diagnosis and I am a very proud parent of two active boys.
About my family:
My husband and I have two boys with DMD, they were diagnosed about 8 years ago. We live on a farm in Northern Minnesota. I have no family history of DMD.
Name(s) of child(ren)/individual(s) with Duchenne:
Will and Isaac
Age(s) of child(ren)/individual(s) with Duchenne:
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I live near Madison, WI. My 4 year old son Joseph was just diagnosed with DMD in July. (deletion of exons 45-50). I am currently 22 wks pregnant and just found out yesterday that I'm having another boy so I'm working on getting in for carrier testing now. They say there is a 86% chance that I am a carrier. There is no family history anywhere on my mom's side and we aren't sure about my father's side of the family. My dad doesn't have anything except hypertrophic cardiomyopathy which is a little odd as that does tend to run hand in hand with MD. He also had an uncle in a wheelchair that died in his 20's but no reliable sources to tell us why. My dad is going to ask for blood tests if I find out I am a carrier. My mom on the other hand doesn't want to know.
I hear you were at camp this week with your boys and mine too! Suzie (Suzanne) said you may have some questions about growth hormone as you watched Xavier get his shot last night. Hard decision, but we are so glad we decided to do the test and start him on it. I would love to talk with you some time, maybe even try to get together. I have no clue where Gully, MN is, but we can figure it out. Suzie said that our boys hit it off this week. Take a few days to recover and let's touch base sometime!
I saw you made a coment in deletions and saw that you have two boys with Duchenne. I would be interested in sharring stories....I too have two boys with DMD. Scary eh! OUr world started falling apart on July 6...the diagnosis of my oldest. Since then, I have been diagnosed a carrier and my youngest was diagnosed about a month ago.
Not sure how you are coping? I love my kids so much. I see a therapist and take prozac to deal with the pain. Anyway, just thought I'd reach out. I will be going to the conference this year...Gimme some news about your bopys...how old are they,...mine 18 months and 7...
its heartbreaking, and I feel your pain momma!!!! HUGS!!!