I am devestated because of my 3 year old grandson's DMD. I live over an hour away from Connor and his 3 siblings and am unable to help out frequently. I am very limited financially; my frustration is compounded by health issues. I so want to help and also need my own support system!
About my family:
My daughter who is not a carrier has 3 other children under the age of 5 and works full time. Her husband is an emt; they have had so many crises including his bout with testicular cancer.
Name(s) of child(ren)/individual(s) with Duchenne:
Connor William Mullaly
Age(s) of child(ren)/individual(s) with Duchenne:
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Good to hear from you. Yes, some of the pictures were when Nicholas was diagnosed with Duchenne. I put some recent pics of him. He's growing up so fast.. still the "apple of my eye". Call me any time if you want to chat. Hugs to you and Conner.
I can relate to the devastation you are feeling having received the news about little Connor being diagnosed with Duchenne. My two grandsons were diagnosed at ages 5 and 2 (they are now 8 and 5). We had never even heard of Duchenne before and do not have a history of muscular dystrophy in our family.
Connecting with PPMD is a very positive move -- and also with others who have grandsons with Duchenne. Last summer Anita Bullers (who emailed you earlier) and I coordinated a workshop entitled "Grandparents and Duchenne" just so something supportive would be in place for the unique role of grandparent.
My family lives in Pennsylvania. I can be reached at firstname.lastname@example.org -- I invite you to contact me anytime and often. I think grandparents can offer each other a special kind of support and understanding regarding what you are going through.
I'm so very sorry to hear about Conner's diagnosis. I am also a grandmother of a 8 year old who has Duchenne. Nicholas was diagnosed when he was 3 and we found PPMD shortly thereafter. Judith, you have already taken one of the most important steps by finding PPMD. There is a wealth of information on this site to help nagivate the journey. I appauld you for reaching out to others. We are here to walk along this road with you. I welcome the opportunity to talk to you if you'd like. My email address is email@example.com and if you email me your phone number and a good time to phone you, I will give you a call.
Being a grandparent of a child diagnosed with Duchenne can be a difficult position, but we're glad you realize that in addition to doing your best to support your family, you also need to make sure that you are finding the support you need to deal with your own emotions! If you haven't already, you may want to read the page on Grandparents on PPMD's main site: http://www.parentprojectmd.org/site/PageServer?pagename=Understand_family_grandparents