Billy

Billy was diagnosed with gastroschisis, or short bowel disease, at birth. He spent the first year of his life at Phoenix Children’s Hospital. Billy's mom estimates that, over the years, he has spent a total of four to five years of his life at Phoenix Children’s, sometimes here for months at a time. Billy was a member of the first Children’s Advisory Board, a group of current and former patients who help make important decisions about the Hospital. 

Billy also underwent a small bowel transplant in May, 2007. He was born with a diseased digestive system and lost most of his intestine and wasn't able to eat for eight years. He suffered with frequent infections and hospital stays due to living off of IV fluid called TPN. Now, at age 21, Billy continues to persevere despite the challenges of his illness. 

 How has your disease affected your life?

I spent most of my life in the hospital, making it difficult to have anything close to a normal life for a kid.  I missed out on a lot of activities, friends and school, but I made a lot of friends at Phoenix Children's. People tell me that I inspire them because I have overcome so many difficulties.

What was your longest hospitalization?

I lived at Phoenix Children's for my entire first year of life!  Then I frequented Phoenix Children's so many times that I've lost count.  Usually I was in for at least a week, sometimes a week every month of the year; sometimes as long as a month. 

What is your favorite thing about Phoenix Children's?

Food Room service!  Being able to order what you want, when you want.

What is the most difficult aspect of being hospitalized or your treatment?

Missing out on life going on outside the hospital, and missing out on friends. It was also hard to make plans because we never knew if I was going to get sick.

Is there someone, or some aspect of your hospitalization that really stands out in your mind?  

The care at Phoenix Children's is life saving, but goes way beyond just saving a person physically. They know the kids are whole people, not just little people, but with families, friends, hopes, dreams, and fears. The people at Phoenix Children's take care of the whole person and recognize that little people – and even teenagers – need different care than adults.

How has your illness changed your outlook on life?

I am a stronger person because of all that I've survived, and I have a lot to thank God for.