Article published May 27, 2008
Web helps families share medical updates
Patients' friends, relatives going online to check on their condition
Jake Swoap created a Web site to keep relatives and friends informed about his son Ty, at left in the arms of his mother, Karlyn. Four-year-old Ty suffers from Treacher Collins Syndrome, a genetic disorder that affects the development of facial bones and tissues. He has had 15 surgeries so far to reconstruct his face.
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THE BLADE/AMY E. VOIGT
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By JULIE M. McKINNON
BLADE STAFF WRITER
As 4-year-old Ty Swoap started recovering from surgery last month, his mother updated a blog devoted to the Perrysburg twin's lifelong medical struggles from his hospital room at the University of Michigan.
Last year, as John Harbert struggled with lung cancer that had spread to his brain, he and his wife frequently checked his Web site's guestbook to see what friends and family had written. His wife, Donna Harbert of Point Place, periodically updated the Web site, ending with her husband's December death days after he turned 51.
"Everybody wants to know what's going on, but you can't talk to everybody," Mrs. Harbert said. "It's a support group you can have in the privacy of your own home."
Both families are among those who have turned to the Internet to keep friends and relatives informed about medical conditions and treatments. Some, including the Swoaps, have de-signed their own Web sites and blogs, while the Harberts and others use free online services aimed at patients such as CaringBridge.
Ty's Web site was created by his father, Jake Swoap, and mostly written by his mother, Karlyn. Mr. Swoap initially got instruction and a free Web site through GoDaddy.com Inc., but it got so many hits the Swoaps had to upgrade and spend $200 for two years.
Relatives and friends appreciate being able to go on Ty's Web site to read the latest on his treatment for Treacher Collins Syndrome, a genetic disorder that affects the development of facial bones and tissues, Mrs. Swoap said. Ty needs hearing aids and has had 15 surgeries so far, including one last month to increase the size of his lower jaw, which barely grows and will need to be operated on every few years."They like it because they're not in town," Mrs. Swoap said. "They got to at least keep updated without phone calls and e-mails daily."
Of their latest hospital stay she said: "I would wait until 11 o'clock at night when he was calm. I would get on [the computer] and update everyone."
Flower Hospital in Sylvania, where Mr. Harbert was treated, started telling patients about CaringBridge a few years ago and has installed seven computers for them to use with a $16,500 contribution from the hospital's foundation. Friends and relatives need a password to access a patient's Web site on CaringBridge, which is promoted by ProMedica Health System, Flower's Toledo parent, and Mercy Health Partners in Toledo.
Employees at Flower heard about the positive power of CaringBridge from the mother of a child who was being treated for cancer and used the Web site to post poems, Bible phrases, and stories, said Bonnie Gratop, a Flower Cancer Center social worker.
"This mom just was able to use it really as a therapeutic resource almost," she said. "We just got to thinking it really would be a nice thing to offer our patients."
Roughly 550 people visited Mr. Harbert's Web site, entering words of love and encouragement in his guestbook.
"When you've got cancer and you're sick, nobody wants to bother you," Mrs. Harbert said. "The support that the Web site gave us was just incredible."
Ty's Web site was launched in January in preparation for an April fund-raiser put on by Mr. Swoap's union, Brotherhood of Locomotive Engineers and Trainmen Local 285. Mr. Swoap is an engineer for Norfolk Southern, and the April event raised about $37,000 to help Ty travel to California three times to have ears surgically formed for him.
The boy also was chosen to be the recipient of proceeds from this year's Andy Burris Memorial Poker Run and Party on Saturday at Carpenters Local 1138, 9278 Bass Pro Blvd., Rossford. The poker run, named for a carpenter killed while helping build the Veterans' Glass City Skyway, begins at noon Saturday, and the party starts at 3 p.m.
Contact Julie M. McKinnon at:
jmckinnon@theblade.com
or 419-724-6087.
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