Child’s need for two lungs garners support

Published 12:00 am Thursday, September 30, 2004

In her 10 years, Emily Haley, a student at Suffolk’s Academy of Godly Education on Godwin Boulevard, has felt more pain and sickness than anyone should in a lifetime.

A lifelong sufferer of cystic fibrosis, she spends several weeks a year in the hospital, fighting off pneumonia and other infections – so much so that doctors aren’t always sure how to treat her, as her body has started to fight against certain antibiotics.

Every day, she has to spend an hour with a vest tied to her chest, attached to a machine that lightly shakes and compresses her back and chest, loosening up the mucus that the disease has built up in her lungs. She can’t go out and play with her friends, attend regular school, or even walk up a flight of stairs without stopping to catch her breath. Her lungs are so damaged that she needs a double-lung transplant, which may not come for the next year or so – if at all.

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But Emily’s isn’t a sad story. Instead, it’s of a girl who’s brought hundreds of people and several communities together to help out someone they never knew.

Ever since word of the Great Bridge girl’s illness got out, people from up and down Virginia and the Carolinas have been doing more than she ever expected, says her mother Ruth.

&uot;I just can’t believe how people have reached out,&uot; said Ruth, who quite her job at a nursing home to take care of Emily and her three sisters (her husband Bill is a route salesman at Frito Lay). &uot;People just want to try to help.&uot;

A lot of people. Since word of Emily’s upcoming transplant (and the $500,000 bill attached to it) got out in late June, the area has sprung into action.

Things started off with a car wash in Norfolk, followed by some craft shows at the Virginia Beach Pavilion. Softball tournaments were held in Virginia Beach and Chesapeake. A Cold Stone creamery ice cream shop at the Pembroke Mall Town Center donated a portion of its profits for a one-day sale, and an IHOP and Southtrust Bank held bake sales. Hell’s Point Golf Club in Virginia Beach held a benefit golf tournament on Sept. 23, raising nearly $12,000.

One Saturday, the music group Blended, which has performed on &uot;Oprah&uot; and &uot;My Life as a Sitcom,&uot; will perform a benefit concert for Emily and London Bridge Baptist Church in Va. Beach. On Oct. 10, there will be a charity and poker run at Chesapeake City Park and another road rally starting at the Church of the Holy Family on Great Neck Road in Virginia Beach on Oct. 16, three days before Emily turns 11. Hundreds of coin canisters lay in stores throughout eastern Virginia and North Carolina.

&uot;People in the community have just rallied around us,&uot; says Ruth, watching her daughter strap on the vest.

Emily also has to take 12

pills a day and two breathing medicines to clear up the mucus, raising the family’s medical bills $30,000 a year.

Before she was even born, Emily’s parents suspected that something might be wrong; two of Bill’s siblings died of cystic fibrosis. Two weeks after she was born, they found out that they were right, doctors diagnosed their daughter as being one of the 30,000 Americans to have the gene that causes the body to produce an unusually thick mucous and clog the lungs.

Unlike hearts, lungs recipients are not listed by status – a sicker person is not moved ahead of a healthy person if the healthy person signed up first.

When Emily’s name gets near the top over the next few years, she and Ruth plan to move to Missouri to wait for the transplant.

After the transplant, they’ll need to stay in the area for three months to make sure that Emily’s body doesn’t reject the new lungs.

Emily can’t wait for the operation to be over.

&uot;I can run some, but not a lot because I cough,&uot; she said. &uot;I can’t play with my sisters. I want to not cough a lot and run as much as I want and play a lot of soccer.&uot;