Web Site Helps Family Cope With Girl's Disease

Sunday, March 29th 2009, 6:37 pm
By: News On 6

By Chris Wright, The News On 6

COLLINSVILLE, OK -- The popularity of social networking sites is sky-rocketing. While Facebook and Twitter dominate the headlines, other sites are being used to help those battling illness and disease.

Often patients and their families say it's difficult to understand exactly what they are going through. Many are turning online to connect with others who truly do.

Seven-month-old Ella Magee spends most of her days sleeping as a result of her medication.

In February, Ella was diagnosed with mitochondrial disease, which prevents the body's cells from producing the energy it needs to function. It eventually causes organ failure, and almost always, death.

"It's pretty awful to know that she's not going to grow up," said Ella's mother, Jennifer Magee.

Jennifer Magee says she was devastated by the diagnosis, but has found some solace on the Internet.

She created a Web site for Ella on CarePages.com. The social networking site allows her to post updates about her daughter's condition, as well connect with other parents who are dealing with mitochondrial disease.

"It's nice to know, too, that I'm not the only one feeling the way I feel, that we're not the only one going through the grind and all the appointments and the stress and worry," Jennifer Magee said.

While they admit the odds are against them, Ella's family members say social networking has provided them with something they desperately need -- hope.

"You can vent a lot," said Lisa Grimsley, Ella's grandmother. "It makes you feel better going on there and checking on her and others in her same position."

Ella is feeling a little better these days. Sunday was her first day at home after a lengthy hospital stay. So for once, her family had some positive news to put on her care page.

"We just want her to have a chance, even if it's small, even if it's slim, we'll take it," Grimsley said.

The Magees have insurance but say many of Ella's procedures are not covered. They have opened a fund in her name. Anyone wishing to help can do so at any RBC bank.

Visit Ella Magee's CarePage.