Haley being Haley

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Posted by haleyismyhero on February 12, 2009 Full Size|

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2 Comments

Reply Lisa
10:49 PM on October 19, 2009 
Missy,
Thanks so much for your kind words and compliments. Yes, we both do live in a new "normal". I think the words of the poem, "Welcome to Holland" captures it so well. Especially the line that says, "and all the time people are coming and going from Italy" ...that is the painful part. Did you know that there is a remarkable number of Dravet children who have Down's syndrome siblings. I know they were thinking of doing some research on that connection. There are more than a handful in our small community. Three board members have both a Dravet child and Downs child. Thanks for your prayers and for writing. Through our children's difficulties, God will make us stronger! HUGS!!!
Reply Missy
10:17 PM on October 19, 2009 
She is absolutely one of the most beautiful little girls that I have seen. Her face is stunning. I came across your website through a friend whos son has Dravets also. I am the mother of a precious little 7-year old with Down syndrome. Life sure is not always easy but I have learned many life lessons though him. Sounds like your family is alot like ours...we just have a different kind of normal now. Praying for a cure for Haley and our friend Brian. It's very apparent you are wonderful parents. Keep up the good work! Haley is a very lucky little girl.