Clairebear Foundation: Helping families of critically ill children

A Victor family that suffered the devastating loss of a child is helping other families with critically ill children.    "At 3-years-old she would walk into a room and own it.   She was always happy," said Mike Colyer.  He is speaking about his daughter Claire.  Colyer says she seemed like a healthy toddler until she started complaining of neck pain.   The Colyer's took her to a neurologist.  Doctors did numerous tests, but said everything looked fine. 

Then, one day Claire collapsed and was rushed to Strong Memorial Hospital.    "They basically came in, sat us down and said she need a heart transplant," said Mike Colyer.   Claire was diagnosed with Restrictive Cardiomyopathy.  It's a rare condition where, with time,  the heart loses the ability to pump blood properly.   "You go from one day being a normal family and then just your world breaks apart," said Lisa Coyler, Claire's mother.   Claire was put on a waiting list for a heart transplant and transferred to Mount Sinai Hospital in New York City.  Weeks later she got a new heart.  

Mike Colyer kept an online journal to update family and friends.

 Monday July 9, 2007
 "We're off to a good start.  Claire is doing well today."
However, Claire had developed an infection. A little more than two weeks after her surgery 3-year-old Claire Colyer died. 

 In another journal entry:

Wednesday July 18, 2007
"There are no words.  Claire lost her battle last night.  She fought right to the end.  She was a brave little girl and an inspiration to us all." 

"She was an old soul.  She was an amazing little girl," said Lisa Colyer.   "I think the hardest part was coming home and having to tell our other children that Claire wasn't coming home," said Mike Colyer.

 Even as they grieved the Colyer's made a decision to help other families like them.   Together they started The Clairebear Foundation. It's an organization that gives financial support to families with critically ill children hospitalized away from home.   The foundation gets one to two requests a week for help.   They help local families with children hospitalized at Golisano Children's Hospital at Strong  or another hospital outside of Rochester.   The charity has helped the Colyer's cope with their grief.   "The hardest part for me was, I remember thinking, she was the perfect little three year old," said Mike Colyer.   "And that's what we have left.  She is always going to be a little three year old for us." 

The Clairebear Foundation is having its' 4th Annual Golf Tournament on Friday, June 24th at the Ravenwood Golf Club in Victor.   You don't have to play to donate.

Checks can be mailed to:

 The Clairebear Foundation
 P.O. Box 125
 Victor, NY   14564

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