‘Part of our family’: Shriners support of hospitals has changed local lives – Daytona Beach News-Journal

Jim Abbott @JimAbbottwrites

ORMOND BEACH It was roughly two years ago that Voula Koulouris started to notice unusual bumps on the arms and legs of her youngest child, Theodore.

When X-rays revealed a rare bone condition, multiple hereditary exostoses, the Koulouris family soon became frustrated with the treatment options they could find with area doctors.

We met with numerous doctors and it was just one door shut after another, Koulourissaid on a recent afternoon in the familys Ormond Beach home. We had started to lose hope.

After roughly six months of searching, the family contacted Shriners Hospitals for Children, the network of 22 hospitals in the United States, Mexico and Canada. The hospitals, the main mission supported by members of Shriners International celebrating their annual convention this week in Daytona Beach, specialize in treatment of young patients with orthopedic issues, cleft lip and palate, burn care, spinal cord injuries and other complex conditions.

I was like, Why havent I heard of this place? said Koulouris, 37, who learned about the option from a friend. The family soon visited the Shriners Hospital in Tampa, where doctors specialize in bone and joint disorders, spinal conditions, neuromuscular disorders and other complex orthopedic conditions.

Now 5, Theodore plays basketball, football and other outdoor activities, enjoys constructing intricately designed Lego cities with his brother, Demetri, 9, and his sister, Konstantina, 11. He still receives periodic Shriners Hospital exams and treatment for his condition, which will remain a concern even after his bones have grown to their adult size, his mother says.

In November, a doctor from Shriners Hospital in Chicago will meet with Theodore at the Tampa hospital, where the young patient enjoys walking past images of the cartoon "Chipmunks" because one of them shares his name.

Theyve seen his wrists chipping, his wrist is twisting, and he has bones inside his fingers that they want to check," said Koulouris, adding that her son shows no anxiety about the hospital visits. He doesnt call it a hospital. He calls it Shriners and he likes to go.

For Voula and her husband, John, an executive at Winn-Dixie supermarkets, Shriners care is a revelation.

As much as the medical care, the family was impressed with the personalized touch that the hospital staff offered, a refreshing change from other medical offices that had seemed intimidating and, at times, even unfriendly.

That first phone call, I wish I had gotten her name, she told me, Talk to me; tell me about your son, Voula said. When we arrived at the hospital, they greeted each of our three children by name. At (Theodore's) first examination, they all walked in on their knees, so they could interact with him on his level. They make him feel like hes part of their family.

That family connection is an attitude shared by the Shriners, said Gary Bergenske, incoming imperial potentate at this weeks convention that runs through Thursday at the Ocean Center and elsewhere in the Daytona Beach area. Theodore is among the local patients invited to appear on stage Wednesday morning as part of the conventions pageantry at the Ocean Center.

With the Shriners patients, we treat them, and they become part of our family, said Anne Bergenske, wife of the Shriners incoming potentate who will helm a year-long project to support medical research to be unveiled on Wednesday to the membership.

The Koulouris family also will be among the Shriner patient families participating in the Walk, Ride Or Drive For Love benefit event on Sunday morning at Daytona International Speedway. In that event, a $25 donation offers an opportunity to walk on the famous track or ride a motorcycle or drive a vehicle to support Shriners hospitals.

A former Shriners patient, Jennifer Schaich, 44, also plans to do the fund-raising walk on the track.

A DeBary resident, Schaich works as an independent phlebotomist, drawing blood samples primarily from elderly or disabled patients. That career wouldnt have happened without childhood treatment for radial dysplasia, a rare congenital bone condition, in the early 1970s at Shriners Hospital for Children in Chicago, she said.

I dont have radial bones in either of my arms, Schaich said. I have no wrist movement, so any movements that Im able to make come from my shoulders, elbows and fingers.

Growing up in Milwaukee, Wisconsin, Schaich and her mother went for weekly treatments at the hospital in Chicago, joined by her father on the weekends, she said.

I was a pretty ill child, Schaich said. In addition to my arms, I also had a blood disorder. I still have it today. My parents moved to Florida partly because they thought that I wouldnt be as sick all the time if I moved to a warmer climate. And it worked. I very seldom got sick after I moved here."

Because she was so young, Schaich doesnt remember much about her childhood hospital visits.

My mom has told me a lot, Schaich said. She tells me that the staff, they would love to put me at the nurses station because I was such a happy kid.

Schaich does recall that her treatment resulted in some odd hobbies.

When I was little, I had a bag full of casts, she said. I would have to wear a lot of casts after operations, so every time one was cut off, Id put it in this huge garbage bag. I also started to collect the long pins they would use to try to straighten out my arms. I used to take those to show-and-tell."

Now, Schaich retains that upbeat spirit, unwilling to back away from any challenge. She loves fishing with her boyfriend, sewing, playing pool and boating. Perhaps because of her childhood treatments, she gravitated to patient care.

I wanted to be in the medical field, but I didnt trust myself in a field where I needed to ambulate people, even though I have tremendous strength in my forearms, she said. When its lifting a material object its one thing, because if you drop it and it breaks, its just a thing. When its a human being, its a different story. Then, I considered phlebotomy. I could do that and I could make a goal to be better than anybody else out there.

Schaich is close to achieving that goal, according to one longtime co-worker.

Shes funny, but she knows her stuff, knows her business, said Tammy Jones, who has worked with Schaich for 15 years. I dont look at Jen as a handicapped person or someone with a disability. What she does, a lot of people wouldnt think of being able to take on that challenge. But she does it like its second nature. Shes close to knowing everything. I still call her to ask her questions.

Schaichs ultimate goal is to tell her story to others facing anxiety related to challenging medical conditions, she said.

If a parent is dealing with a child that has a serious condition, maybe they are thinking, Oh my God, my kid is never going to amount to anything. I can show them anything is possible.

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'Part of our family': Shriners support of hospitals has changed local lives - Daytona Beach News-Journal