Las Vegas area foundation focuses on aiding children with arthritis

The little girl wasn't quite 1 year old. Yet the doctors and specialists couldn't explain why Janessa and Mark Dynabursky's daughter Savannah was continuously ill.

"It was just after her first birthday we were told it was juvenile rheumatoid arthritis," Janessa Dynabursky said. "We thought 'Oh, just arthritis?' We didn't know how debilitating or how challenging that could be."

The Arthritis Foundation estimates that 50 million people suffer from arthritis or chronic joint symptoms, and of those, about half a million Nevadans are affected, according to the Arthritis Foundation Nevada Branch.

"But it isn't just an old people's disease," Dynabursky said.

About 2,300 of those affected in Nevada are children.

Jennifer and Robert Hoag, whose daughter Makayla had arthritis and died April 5, 2009, said many assume that arthritis is only a swelling of the joints.

"Children have no immune system," Hoag said, "so things like the common cold or chicken pox could be fatal."

Although there are an estimated 2,300 children with arthritis in Nevada, there aren't any pediatric rheumatologists -- or physicians who specialize in children with arthritis -- in the state.

"We are one of the few states that doesn't have at least one," Dynabursky said.

According to Danielle Blum, the special events coordinator with the Arthritis Foundation Nevada Branch, there are adult rheumatologists, but they differ from pediatric specialists.

"Pediatric rheumatologists know what to look for in children," Blum said, "so usually children have to fly to California or wait for (a specialist) to come here."

Dynabursky said having a pediatric rheumatologist isn't just beneficial to help diagnose but to answer simple questions when flare-ups or accidents happen.

While trying to understand the disease, both families have found solace and support through the Arthritis Foundation, to which they return their gratitude by volunteering and raising awareness.

Both plan to attend the Arthritis Foundation Nevada Branch's next event, "Let's Move Together," at 8 a.m. Saturday at The Village at Lake Las Vegas, 15 Costa di Lago, to raise money to find a cure for arthritis.

"I want to bring awareness, raise money to find a cure and bring a full-time pediatric rheumatologist ," Dynabursky said. "So many hopes. So many dreams."

The event features a 1 -mile and a 3 -mile course option for participants.

"We started walking the minute we found out about it," said Dynabursky, who is ready to walk for her second year.

Savannah and the Hoags, who are walking in memory of Makayla, are honorees at the event.

"We will always walk even until my husband and I cannot walk any more," Hoag said. "We will walk for the memory of our daughter."

Entertainment, food and a children's zone with carnival games and cartoon characters are also scheduled. The organization hopes to see 500 people turn out this year.

Blum added that the event is designed to raise at least $200,000. Last year, more than 300 people helped raise more than $100,000.

"We decided to raise the bar this year," Blum said.

In addition to raising money to find a cure and give treatment to those affected, the event also teaches prevention.

"We want to encourage people to get moving," Blum said. "When people don't move, that is what causes their joints to stay stiff."

According to the Arthritis Foundation, moving 30 minutes per day can ease joint pain, improve mobility and reduce fatigue.

For more information, visit letsmovetogether.org.

Contact Henderson/Anthem View reporter Michael Lyle at mlyle@viewnews.com or 387-5201.