We found out just last week that a 3rd of our 4 sons has DMD.  I'm in a state of shock, but yet overwhelmed at the same time.  Is there anyone who has been through this already that might have some advice for me?  Anything would help.

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Hi Betty.  I am so sorry to hear that!  I can imagine how shocked and overwhelmed this must be for you.  While we are not in the same exact position as you my husband and I have only 2 sons and both of them have DMD.  My sister has 3 boys and has 2 have DMD so this is a bit shock for our family as well.  We have known for 2 years now and still it is a bit of a shock at times as you don't hear too many stories of this happening where 4/5 boys between my sister and I are affected.  Take it one day at a time and deal with one thing at a time is all I can say.  We find it gets too overwhelming otherwise!  Hang in there Betty  and take care.

 

Mandy

Oh Betty I am so very sorry. I cannot imagine the pain you must feel with this. Please know you are not alone. The only thing I can suggest is taking it one day at a time and reaching out when you need it like you are right now. Hang in there, you are an amazing and strong woman, your boys will always be grateful for your love. My heart goes out to you and your family.

Hi Betty,  I'm so sorry to hear about your sons.  Both of my sons have DMD.  Found out when they were each 4 yrs. old.  the younger was only 3 months old when we found out about the older son.  I have one sister who has 2 children, the girl appears to be a carrier, but with genetic counseling neither she or her brother are affected.  I know how I felt when we were told about the older son; then hopeful until we got test results about the younger.  There are no words to describe how I felt at that time.  We took advantage of all opportunities and GREAT vacations and "field trips", building a broad base of experiences for them, so they could continue to relate with their peers.  Took lots of photos, too.  Peering over the ''edge" of the Grand Canyon was one of the "death defying" (my younger sons choice of words!) experiences & photo ops.  My sons are great company for each other as adults (33 & 36 yrs. old) and computer "techies".  One son completed his MA in Botany and taught several years for the Biology Dept. at the University where he graduated.  The other son was designing accessible housing for our family.  Life changes, and is different than what we expected, but we've had great adventures so far, and keep planning more.  The beach has been a fantastic experience for all of us.  The guys are able to drive their electric wheelchairs on Pismo beach near our home. There are many accessible places to explore...and a lot of fun for the entire family. Enjoy every one of them.  Write anytime, Laurie Barton

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