Couple honors late daughter with a hike that helps others
The sudden, inexplicable death of their oldest child sent Sarah and Steve Calaway reeling, but they found a way to honor her caring spirit and help others at the same time.
Alyssa Calaway was 8½ years old when she died on Sept. 12, 2002. She was sick for only a matter of days with what appeared to be the flu. Instead, she had viral myocarditis, an inflammation of the heart’s muscular wall. To this day, her parents don’t know how or when she picked up the virus that caused the inflammation, but they have learned much about this rare disease, and they want to arm others with knowledge that could potentially save lives.
The Calaways are furthering their educational goal through an annual fundraiser, Alyssa’s Hike for the Hearts, which they started in 2004. Last September alone, they raised more than $30,000, half of which supports viral myocarditis research and education at Cleveland Clinic’s Pediatric Institute & Children’s Hospital. The rest goes to what they call “camperships” for children who can’t afford to attend the summer camp run by their church, The Chapel in Akron, Ohio.
“We wanted to do something that represented our daughter,” Mrs. Calaway says. “She was quite a lady. She loved her friends and loved God very much.”
According to Mrs. Calaway, education is important because parents and even physicians may not associate flu-like symptoms with the life-threatening condition that is viral myocarditis. “We had no clue about the severity of Alyssa’s illness,” she says. “She went to school on the Monday before she died. I kept her home on Tuesday, but she was well enough to play outside a little bit.”
By Thursday, despite four trips to see her pediatrician, Alyssa’s condition had worsened, and Mrs. Calaway took her to an Akron hospital. Alyssa’s symptoms included a headache, stomachache, extreme fatigue, vomiting and dehydration. Other than those few days of illness, Alyssa was “super healthy,” Mrs. Calaway says. “There was no information about viral myocarditis when my daughter died. We wanted to make sure it was there for other people. We wanted to make sure we made a difference. If we can find a cure or preventative, we want to be part of that.”
The Calaways are grateful to Cleveland Clinic physician M. Janine Arruda, MD, to whom they turned for answers after Alyssa’s passing. “We took the autopsy report to her, and she explained what happened in terms I could understand,” Mrs. Calaway says. “One of the most healing moments was going to her and learning that it was nothing I did wrong.”
The Calaways’ son Steven, 10, and daughter Emma, 5½, see Dr. Arruda for their checkups. “She monitors them,” Mrs. Calaway says.
Research conducted by Dr. Arruda and Gerard Boyle, MD, Section Head, Pediatric Heart Transplantation and Congestive Heart Failure, includes finding a way to pinpoint the signs and symptoms of viral myocarditis in order to make an early diagnosis. If physicians know what to look for, they can intervene with steroids or other treatments before the heart muscle is irreparably damaged. Mrs. Calaway says she appreciates that Dr. Boyle teaches other physicians how to recognize the symptoms of the disease.
This year’s Hike for the Hearts will take place Sept. 19 at Goodyear Metropolitan Park in Akron. More information is available at Alyssa’s Hike for the Hearts.
Since the inaugural hike five years ago, the camp has not turned away any campers, Mrs. Calaway says. “We get letters back from kids who got to attend because of the hike. We’ve seen how God has used this camping experience to change their hearts. Other hearts have changed as a result of my daughter’s heart.”
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