Finding a cure for Ariana

Her parents — George and Bertha Kallas — noticed huge improvements since Kallas began receiving outside help. But, they know their little girl will never be physically average.

Kallas was a happy little baby with no significant medical problems for the first few months. Around seven months, the family noticed little Kallas not meeting various developmental points and a mass on the little girl's back. X-rays showed Kallas has three deformed vertebrae in her lower spine and abnormally shaped hips. It would take months of lab tests, magnetic resonance images, doctor appointments and CT scans before learning the cause of Kallas' situation in December -- Morquio syndrome.

"She gets spooked when we walk into a doctors office. She just starts crying," said Bertha Kallas.

Morquio syndrome is caused when a child is missing an enzyme essential in cutting up mucopolysaccharide -- a product normally used in developing healthy bones and cartilage. It is estimated that one in every 25,000 babies born in the United States will have some form of the syndrome. Physical growth slows and often stops in affected children around 8 years old. Skeletal abnormalities can include a bell-shaped chest, a flattening or curvature of the spine, shortened long bones and abnormal growth of the hips, knees, ankles and wrists. Restricted breathing, joint stiffness and heart disease are also common. Children with more severe cases may not live beyond their 20s or 30s.

"Every single bone in her body is different from yours or mine," said George Kallas.

The Kallas' expect Ariana to be short. Many children with Morquio develop shorter torsos with longer limbs, said George Kallas. As a result of the abnormal bone growth, Kallas will probably need a wheelchair in the long run.

There is no cure for the syndrome and little funding due to the relatively small number of children affected. The family turned their efforts to helping raise money for a doctor researching a treatment to slow or stop the effects of Morquio.

Shunji Tomatus, an associate professor at the St. Louis University in Missouri, isolated the enzyme that would stop the progression of Morquio and hopes to begin clinical trials soon.

The Kallases' hope to raise $50,000 to $60,000 to fund the research with fundraiser in June featuring a sit-down dinner, live entertainment and a silent auction. The family is in the process of putting the event together -- including finding donated items for the silent auction. All of the money raised will be donated toward research to help children like Kallas.

"I used to think, 'why me? Why us?' But this happened to her. She's the one who has to deal with it," said Bertha Kallas. "For the rest of her life, she has to deal with the pain. It changes our lives. But, she was given to us because we can handle it. And we can."

The benefit, "A night of magic and miracles," will be held Saturday, June 2 at the Annunciation Cathedral. Cocktails will be served at 5:30 p.m. followed by dinner and a silent auction at 7 p.m. The Bingtones will provide live entertainment. Tickets are $45. For more information call Tula Kallas at (510) 432-0194, George Kallas at (415) 948-3329 or via email at arianascure@aol.com.

Anyone wishing to send contributions can send them to Annunciation Cathedral, 245 Valencia St., San Francisco, CA, 94103. Please state that the donation is for the Ariana's Cure fund.