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About me:: I am a mother of 2 boys a 13 yearold and a two year old my children are my husbands and my whole world ..MY little guy loves to dance and sing he is the light in all our lives .His brother and him have a bond that is truly special they are our whole world !!.

About my family:: we have lost many young men in my family to duchennes i have a 13 year old nephew and his 18 year old brother who are battling duchennes and just recently found out my sweet 2 year old angel also has this..

Name(s) of child(ren)/individual(s) with Duchenne:: alej

Age(s) of child(ren)/individual(s) with Duchenne:: 0-3

City:: wisconsin

my boys

my boys are my life they make me smile on a daily basis when im at my worst they make sure i dont stay there!!

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wondering what to do next.......

Posted on January 21, 2011 at 10:34pm 13 Comments 0 Favorites

My lil guy is going back to dr soon and will be starting steroids. I believe its a good move but hes only two im worried if he starts them now how long will he be on it ,and the side affects im worried about weakining of bones and weight gain..... we should be worried about sledding riding bikes playing and doing all the fun things kids are supposed to do its hard worrying about drs and medicenes and so forth but this is the hand we were dealt and we are trying to stay positive and keep faith… Continue

my little angel my gift from above

Posted on January 11, 2011 at 6:01pm 7 Comments 0 Favorites

We just found out recently our sweet little angel who is 2 yrs old has duchennes .We were and still are scared all we can think is we cannot lose our sweet angel but i have hope and believe they will find a cure all i can think now is to keep my angel as healthy as possible in the mean time .My son is a happy, energetic ,loving soul he is the light in my life and he gives me strength i never knew i had .when im feeling sad and feel im…

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At 2:24pm on January 24, 2011, Valerie Harrell said…: Me too. Especially after just dealing with another nurse who didn't read Daniel's chart before calling.