me and rob at my 21st forever friends of fam
us with my old carer also forever fam friends
my old ei teacher famous in the charge world and now a great fam friend is sick and didnt go to the charge conf in america i am hoping its not his heartxo hes had a bad one he was the one who diagnosed my syndrome he came in said he had others like me and he believe i had charge and he was so right 22 years later rob is still the best friend there is and he is a great person when he taught me he didnt just help me he helped my fam he made sure we all ddi stuff as a fam when he was there i have pics of him with me and my brother hes done stuff with both of us it is so important that the hole family knows whats going on and he made sure that was the case he would be with me while mum and dad went out he organised stuff with other chargers he taught me to talk and to speak and to be the person i am he made sure the drs did what they should of been doing and all in charge land love him and will miss him if anything happens to him
4 comments:
Hi Ellen. This is the first time I've read your blog. You did a great job on it. It'll be nice to keep up on all the things you do. I missed you at the conference in CA. I was so hoping to be able to meet you. You are an incredible person with incredible spirit and an inspiration to so many CHARGEr moms like me.
Hugs, from Shelly and Luke
http://www.caringbridge.org/mn/lukejoseph
Ellen, I will also keep your old teacher and friend in my prayers.
Shelly and Luke
Ellen he was mentioned at the conference and the man who stepped in for him was wonderful. From what I heard it was not his heart so that is good news.
My thoughts and prayers are with him.
Hugs,
Crystal and Eva
Ellen, Rob was awarded the Star in CHARGE award at the conference, the highest award given to persons who have made significant contributions to CHARGE Syndrome. David Brown accepted on his behalf, it was wonderful yet sad that Rob couldn't be there. His beautiful smile and bubble demeanour were missed dearly. I hope he is doing well. thanks for posting the GREAT photos and give him a hug & kiss from Canada when you see him again!
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