An Austin mother whose son died from an undiagnosed medical condition is trying to help other families in similar situations.

Heather Long is joining with others to form an Austin chapter of SWAN USA, or Syndromes Without A Name, after her 5-year-old son, Cal, died two years ago.

"I'm trying to take the tragedy of a child dying and turn it into something positive, because there are so many children out there who do not have a diagnosis," Long says.

"Everybody tells me there is a reason for everything," she says. "I was like, what possible reason could there for my little boy to be so sick and to pass at such a young age? Since then I have been able to find reasons. It opened my eyes to other families with children with very severe chronic illnesses."

Long says she felt isolated as she and her family tried to cope as Cal slowly died.

"We got told so many times we can tell you what it's not but we can't tell you what it is," she says.

After Cal died in 2007, Long has continued trying to find out what killed him. As part of that search, she came across SWAN USA, and is now on the board of directors and is working to form a local chapter.

Joining her is Jennifer McKay, who lost her son Jimmy to an undiagnosed illness last December, and Mary Elizabeth Parker, a physical therapist who specializes in working with children with rare or undiagnosed conditions.

"With cancer and diabetes, you can find support groups and help in those areas, and doctors will sometimes find people with similar diagnoses if they're interested in talking with you," McKay says. "In the undiagnosed community, that doesn't exist."

Having a child with an undiagnosed illness is difficult not only emotionally, but also financially. Many times insurances companies refuse or are reluctant to pay for services without a patient diagnosis. In addition, families want to know the cause of death to know if genetics played a role, which could affect other family members as well as decisions about having other children.

Long and others hope that SWAN will provide emotional support for families, as well as advocate for them with the medical and legal communities.

"It's not always about getting a diagnosis, sometimes it's just getting through what you end to get through and making the tough decisions," Parker says.

SWAN is having a fundraiser in Austin Dec. 2 from 11 a.m. to 10 p.m.at Fish City Grill, 4616 Triangle Avenue. The grill will donate 15 percent of overall proceeds to the Austin chapter of SWAN.