Emily Haley, whose battle against cystic fibrosis led the community to raise about $500,000 for a double lung transplant, died early Monday. She was 14.
“She fought this hard until the end,” said her aunt, Patty Grimes.
Family members said that Emily was doing well until a few weeks ago .
“Things took a turn for the worse,” said her father, Bill Haley. “She couldn’t fight an infection.” She died at Children’s Hospital of The King’s Daughters in Norfolk.
Over the past two years, the condition of Emily’s lungs had not deteriorated to the point where she needed the transplant. If she had beaten the infection, she could have flown to St. Louis, Mo., for the operation, Bill Haley said.
The community in 2004 got behind Emily after a thief stole a canister of donations for her operation from a Chesapeake sub shop. After media attention generated by the theft, the Emily’s Breath of Hope campaign raised more than $500,000 in just seven months.
The money raised through auctions, raffles and benefit concerts will now go toward the Children’s Organ Transplant Association to be used as matching funds for other operations.
“Our family can’t thank the community enough,” Grimes said. “They saw a little girl needed their help.”
Bill Haley wanted to ask one more thing of community members: to become organ donors.
Emily enjoyed being with her 12-year-old sister and twin 11-year-old sisters. Despite being diagnosed with cystic fibrosis, which made it difficult for her to breathe, Emily wanted to dance and play soccer like her sisters. And she did.
“She never wanted to let this keep her back,” Grimes said.
You know what to do.
1 comment:
Hey Lady...
Thank you so much for remembering Emily this way... It hurts so deeply when this happens to anyone, but particularly when it happens to a precious child...
Emily never, ever understood what it was like to breathe like a "normal" person -- and that's so unfair... I know she never wanted to let CF keep her back -- there are so very many CF people like that... And I also know that she never really knew what she was missing... With progressively lousy lungs, it simply becomes how you live... Being unable to run a block doesn't matter because you've never been able to do so many things... You just learn to live with what you've got and it becomes "normal"...
It's so not "normal"... Unlike Emily, I did get two new lungs about eight years ago -- and this blows my freakin' mind... It's been over eight years and it blows my freakin' mind every single day -- I think about it every single day... I so wish that happened to Emily...
Thank you for doing what you're doing, Emily... And yes, you're doing it so that other Emily's can live... People need a face and an image, and sometimes a beautiful little girl and a grieving family to understand how special and important organ donation truly is... I know that you and I can't shake everyone in the entire world and tell them just how important this is -- and sometimes when someone like Emily passes away, I feel bad for not being able to do so... But we can tell someone -- you've just let a lot of people know how important it is -- I think Emily Haley would be touched by your efforts...
The beautiful girl who saved my life was only a few years older than Emily... Her name was Kari. She was healthy as a horse, but in the month before she passed she told her family twice how strongly she felt about organ donation... I'm breathing because of her -- I can see her smile when I close my eyes... I have a little about her at www.ClimbingForKari.org
And I too blog about organ donation at www.ReviveHope.com
Thank you again, Emily... Thanks for remembering Emily Haley -- and thanks for the "you know what to do" at the end of your post...
Love,
Steve
Steve Ferkau
Chicago, IL
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