My husband and I had a child with Cockayne syndrome, like Julia…they are precious, sweet spirits. These little ones never weigh very much, when they have the severe type of cockayne like Julia. They are tiny little children with huge hearts! They do have shortened life spans but the journey you take with them is worth it J These children love to be held…
We would grab her in an instant but I just found out about RR only a week ½ ago. When I saw Julia’s face and heard the conditions of her care I was brought to my knees. God told me to DO SOMETHING last week so I started a blog for Julia and a facebook page under Julia’s Hope. Seeing her little face in that crib, knowing what she is capable of if given the chance – this has moved me to tears and action! Trying to get awareness to many, many to help get her into a mommy and daddies arms…soon. If anyone wants to talk to me about the syndrome please feel free – going on a local tv show next week to talk about Julia and RR. It would be wonderful to have a family committed to her by then!!!
Kim
Circle of Hope
(256) 759-2178 begin_of_the_skype_highlighting (256) 759-2178 end_of_the_skype_highlighting
Serving families of children with life threatening illness
http://www.helpfortori.blogspot.com/
ReplyDeleteI am happy that Julia has found a family. Now I am hoping that Tori can now be rescued. She is also facing being bedridden for life in an institution.