The boy was on a breathing tube at Primary Children's Medical Center and clinging to life. His mother, Stephanie, was at a loss about what to do until a friend referred her to UtahKids, a network of parents whose children have special health care needs. Soon she was trading e-mails and phone calls with sympathetic mothers whose kids had faced similar hurdles.

"They tend to have better answers to my questions than even doctors, because they've been through it. Moms give more practical answers - real-life answers," said Emery, whose son will celebrate his first birthday this month. "My doctor is wonderful, and I have his cell phone number if I ever need it. But it's not the same."

The Kearns woman and her husband, Kevin, are among an increasing number of Utah parents of disabled children who are turning to one another for medical advice, referrals and emotional support. This peer group fills a role that health care workers often cannot; while doctors are adept at answering technical questions, they aren't always handy at such things as procuring health insurance or recommending the best brand of hearing aid.

A handful of parents formed UtahKids five years ago through an Internet site's discussion group. There are now about 125 people in the group's statewide network, with members trading as many as 1,300 messages a month.

Help also is available through Utah Family Voices, a support center that provides information and referrals to parents of children with disabilities, chronic illnesses or other special needs. Utah Family Voices operates an office at the state Department for Children with Special Health Care Needs (CSHCN) in Salt Lake City.

"Babies don't come with handbooks. Then you add a special need to that . . . and you're navigating a whole new maze," said Gina Pola-Money, director of Utah Family Voices. Pola-Money, who also is a member of UtahKids, lost two sons to a rare nerve disorder. Her three surviving kids have asthma.

"It's a club you never want to be in," said the Salt Lake City woman. "But when you find other families, you form lasting friendships . . . because of the sharing and the deep emotional attachments we have with each other."

These attachments were on display Saturday at an informal potluck lunch hosted by UtahKids and Utah Family Voices at the CSHCN offices. A dozen parents chatted over sandwiches and macaroni salad while their kids, some in wheelchairs, played with balloons and chased one another through the halls.

"I'm here to lend support and say, 'Hey, I've been there. I know what it's like,' " said Tina Persels, co-chairwoman of the event. She and her husband, Steve, are the parents of Adam, a cheerful 6-year-old who has chronic lung disease, cerebral palsy and autism. Persels says she learned how helpful peer support could be when Adam was in the hospital awaiting a tracheostomy.

"Another parent came to me and said, 'If our son can do it, yours can, too.' I went home that night and slept good for the first time in a long while."

Members of the UtahKids network now get together for lunches and other events several times a year. Since they spend so much time at Primary Children's Medical Center, they also take turns bringing home-cooked meals to one another there.

Stephanie Emery, whose truck-driver husband is on the road more than half of each month, cannot imagine raising Joey without the support of the other parents in the network. Whenever she has a question, she sends out an e-mail to the group and always gets a response.

"I just love these guys. Because they get it," she said. "I can call them at 11 o'clock at night and cry for two hours and they'll listen. They keep me sane."

griggs@sltrib.com

For more information about the UtahKids network, visit http://groups.yahoo.com/group/utahkids. For information about Utah Family Voices, call 801-584-8236 or e-mail utahfamilyvoices@juno.com.

UtahKids