In illness, the Web keeps families linked
When her teenage son was diagnosed with leukemia in 2005 and had to leave school for the rest of the year, Jill Baral faced not only heart-rending worries but communication problems as well.
Aaron Baral’s older sister, Amy, also attended Conard High School in West Hartford, Conn., and the family was concerned about rumors, Jill Baral said.
“The last thing we wanted was for our daughter to hear: ‘Did you hear Aaron went into a coma?’ ” Jill Baral said.
Also, Aaron’s extended family of aunts, uncles and cousins were spread throughout the country. Keeping everyone updated would be a formidable effort.
The Baral family found a solution in CaringBridge.org, a nonprofit company that offers individual Web pages to people recovering from sickness and injury. Patients and loved ones post successes and setbacks, while friends and relatives send their thoughts and wishes.
Several organizations provide the free service, and three of the largest -- CaringBridge.org, CarePages.com and theStatus.com -- report rapid growth in the last several years.
Launched in 1997, CaringBridge has hosted about 61,000 websites, which had drawn about 396 million visits as of May, according to the organization. About 6,000 CaringBridge sites have been created for troops wounded in Iraq and Afghanistan, organization founder Sona Mehring said. CarePages.com, which started about seven years ago, has hosted about 60,000 sites. Liane Minster, a spokeswoman for theStatus.com, said the organization did not keep records of Web page numbers, but growth has been consistent. TheStatus.com is available in five languages (English, Spanish, French, German and Arabic), so patients may communicate with loved ones around the globe. The sites all allow print entries and photos.
The Barals used Aaron’s CaringBridge site to update teachers and students at Conard. Teachers showed students Aaron’s page during class and let them send well-wishes, Jill Baral said.
“There was no place for rumors; that was very important to us,” she said. “Every teacher knew what had gone on with Aaron the night before.”
Myra Rivera, also of West Hartford, had similar praise for CarePages.com. Her son, Johnny Ray Molina, was born with serious health problems and had undergone nine surgeries by the time he was 8 months old. He lived a relatively normal life until age 16, when his health deteriorated. In March, Molina, now 19, underwent a multi-organ transplant at the Children’s Hospital of Pittsburgh. Rivera said she and Johnny were staying at the Ronald McDonald House there.
“I think it’s a fantastic community line,” Rivera said of her son’s CarePages site. “I don’t have to make hundreds of phone calls on a daily basis.”
Patient website providers say their service is all about connections. “At the heart of CaringBridge is the power of connecting friends and families during the crisis,” Mehring said. “People always say they feel isolated in their health crisis. What CaringBridge provides is a site that lets them talk about it and get that connection and leave that isolation behind.”
Through CaringBridge, Jill Baral said she has found a community of other parents struggling with their children’s chronic sickness. She regularly checks 15 other CaringBridge Web pages to stay connected with those who understand her family’s battle better than anyone.
“Nobody else,” she said, “can speak this language.”
