DiGeorge Syndrome: Deb’s Story

In January 2000, we were expecting our 6th grandchild. Camery was born at the University Hospital in Seattle where she immediately was put on life support until she was stable enough to move to Children’s Hospital for her first open heart surgery at 4 weeks old.

We found out that Camery has DiGeorge, which can cause a lot of different types of defects. Hers happened to be internal, as opposed to external or mental. We needed a place to bring Camery for her post critical care and we found that place to be here at Children’s Village.

These children’s lives are tethered to hospitals and doctors. It’s important for people like us who have children who have special needs to have a place to come to that is bright, cheerful, has art and has color.

I’ve been an artist for 25 years and I was working on a project with the architects that were re-modeling children’s village. The doctors say that the murals have helped calm the kids and it gives them a way to interact with the children. These kids are little warriors; they fight the good fight every day. Children’s Village is doing wonderful things for these children and I just want to give something back.
I want to be like my granddaughter when I grow up–she’s the bravest person I’ve ever met. She just had her 2nd open heart surgery and she’s doing very well. She has her first valve in her heart. Her heart beats for the first time. At nine years old to have your child have her first heartbeat—it’s something that the rest of us take for granted. It’s a big thing to some people and some families. It takes an army to give these kids life.

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