Marilyn
  • Female
  • Staten Island, New York
  • United States
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About my family:
My grandson Nicolas was diagnosed at 4 years old, he was 13 years old Dec. 1, 2008. He is a wonderful caring young boy. He loves his family, his bird, and his dogs, buffy and rambo. This is not a photo of me, it's my grandson Nicolas and his Mom, my daughter Jacqui and Dad, Nick
Name(s) of child(ren)/individual(s) with Duchenne:
Nicolas
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Parsippany, NJ

Comment Wall (5 comments)

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At 8:31am on March 1, 2009, Rosina Anglin said…
Marilyn,
Your life sounds a lot like mine. My brothers also took everything so well and never complained. I know it was hard on them at times but we all tried to make their life as happy and normal as we could. This included playing with them and yes, fighting with them, like any brothers or sisters would do. My oldest brother died of an infection when I was very young but I basically grew up with the other two. They once confided in me that they thought people probably looked at them and thought they probably wished they were never born. But they assured me they were very glad they were born and they liked their life. I'm not trying to push any religious views on anyone but my mother and father instilled in us a very strong trust in God. That He had reasons for doing things that we could not always understand. That doesn't mean it was always easy but it helped to know that one day my brothers and cousin would be in a much better place.

I too felt that my brothers were like everyone else and I couldn't understand why people would sometimes look at them. When I had my first "real" date and the boy was coming over to meet my family, (my parents were very strict Italian/Catholics) I failed to mention that I had two brothers in a wheelchair. It never occurred to me to say anything. When we left to go out, he asked, "What's wrong with your brothers?" I said, "What do you mean what's wrong?" He then reminded me that they were in wheelchairs so I told him all about DMD and how it ran in our family and I could be a carrier, etc. Well the poor guy ended up marrying me anyway and he too loved my brothers.

But now we know my grandson has it and that's a whole new ballgame. I too feel bad that my little Max, my daughter, son-in-law and Max's big sister will have to face some tough times. Many happy moments but also some very sad ones too. My 2 older daughters did not get tested with their first pregnancies (they both had girls) but when my middle daughter got pregnant a second time she was suddenly filled with an urgency to get tested. She first found out she was having a boy then she found out she was a carrier. When Max was 3 months old, she found out he had DMD. He's not quite a year old yet and she wonders too how much to explain to him about Duschene as he grows up. My parents never told my brothers anything about life expectancy and I wonder if this was the right thing to do. But I also can't imagine what the best way is to explain everything, maybe parents of older boys could comment about how much to tell and when. By the way my older daughter's son was tested and he does not have it. My baby daughter just got married and does not plan on having kids for awhile so she has not been tested. Well, this letter is long enough so I'll close. Write anytime and take care.
Rosina
At 7:55pm on December 5, 2008, Peggy said…
Welcome aboard. My grandson is now 16 months old. He has started wearing night splints and the PT has seen improvements with these. Also, my daughter does his leg stretches every night with him so I know this is helping him too. I know you know what we are going through but II thank God everyday for him.
Peggy
At 12:25pm on October 14, 2008, jacqui said…
Hi Ma! :-*
At 10:12pm on September 30, 2008, Vicky Williamson said…
Hi Marilyn, I've been wondering how Nicolas is doing. We met at the PPMD conference in Pittsburgh several years ago. Our son, Garrett, will be 16 on Thursday and doing pretty well -- very smart!
Vicky - Trempealeau, WIS
At 1:02pm on August 26, 2008, Kari said…
Welcome Marilyn to PPMD Community.
 
 
 

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