One of the stark realities of being submerged into the medical world, is that we've been introduced to too many children who have left this world way too early. Liver disease isn't pretty. It's sometimes hard for me to realize that if Tanner had been born a generation ago, his odds of survial would have been around 20%. It's still hard to realize that even today, a child with Biliary Atresia chances of survival are around 80%.
When we were first submerged into this liver world, three families surrounded us with love, warmth, understanding, and friendship. Two of those families, Aiden's and Anthony's, had very similar stories to Tanner's. They were little boys, born with Biliary Atresia, had liver transplant when they were under 1 year old, and have done well since then.
The other, was Haley's family. Aiden's mom and Haley's mom were very close - and the four of us would often chat on AOL Instant Messenger. Haley's story was very different - she had Autoimmune Hepatitis, and she wasn't diagnosed until she was in childhood.
Haley had a love and compassoin for the other little kids touched by liver disease. She had a true compassion for them - and she reached out to them in the most special way. Haley was a gifted singer and songwriter - she wrote songs for these kids. Beautiful, relevant, funny songs. Billy Rubin talks about bilirubin being a mean fellow and turning her skin yellow, Prednisone talked about the ill effects that this commonly used steroid can have on our liver kids, and Hots! was written for Aiden who used to enjoy McDonald's French Fries after his regular lab draws. But, my favorite song is Everywhere - which talks about her strong faith in God, even through her illness.
Haley had so much spunk. She had a massive brain bleed in February 2005. During surgery, they shaved part of her head - and when she saw it, her comment was "You should never let a neurosurgeon cut your hair." This girl was flooded with hats that people sent her to wear while her hair grew back in. And, what did she do? She shared them with other kids who didn't have hair (many of them cancer patients). She sang at fundraisers whenever possible.
Two years ago on Monday, October 1, Haley lost her fight. At the time, she was just a little over a month away from her 12th birthday. I still remember when I first heard that she'd gone home to heaven. It still hurts me, two years later - I can't imagine the pain that her family endures on a daily basis. Haley's legacy continues in a foundation that her parents started in her honor - The Haley Vincent Foundation. Through this foundation, they send out care packages to kids who are in the hospital due to liver disease and transplant.
I don't talk about it often on this website, although I really should. Organ donors save lives. If Haley had gotten a transplant, she might still be with us here today. I could list a long list of names here - all children who died waiting for a liver transplant or from complications from getting their transplant after they were too sick. These are children - not people who have abused their livers through drink, alcohol, or drugs. There are over 90,000 people waiting for an organ donation right now. Please consider being an organ donor - and make sure that your family is aware of your decision. To find out more about organ donation, please go here.
Angel Haley, we still miss you, girl.