Richard's Story

Richard's Story

It was a bright October day when 13-year-old Richard Sanders hurried across the parking lot to the waiting car.

"Hey, you guys! Guess where I'm going?" he yelled to some friends playing nearby.

Looking up from their trading cards in curiosity, they asked, "Where?"

"I can't tell you!" Richard yelled with an impish grin.

Richard was in on a secret. A big secret. He was on his way to rehearse for his role in announcing the development of the state's first freestanding children's hospital. But he knew he couldn't let anyone know for the next couple of days, when the official announcement would be made at a press conference.

Richard (pronounced Ri-shard) was one of three Phoenix Children's Hospital patients selected to speak at the press conference on October 19, 1999. He couldn't wait to tell members of the media and others in attendance exactly why a children's hospital is different from other hospitals. He knew from experience.

Richard has cystic fibrosis, a genetic disorder for which there is currently no cure. CF interferes with normal lung and digestive functions, and makes the body more susceptible to illness. Earlier in the year, Richard had spent about two months at Phoenix Children's Hospital, hospitalized for pancreatitis, dehydration and walking pneumonia related to his condition. He could compare PCH to experiences he'd had at other hospitals that weren't just for kids.

"One thing I like about the children's hospital is that they're used to taking care of kids who are in the hospital for a long time," he told the crowd. He shared one of his favorite aspects of his stay - the staff let his brothers go to the playroom with him.

For the first eight years of Richard's life, he and his family didn't know that his frequent illness and asthma attacks had a more serious underlying condition. Living on an Air Force base in South Dakota, Richard's mother, Sheila, repeatedly voiced concerns to the base physician.

"I just knew this had to be more than asthma," she said. "I noticed that his fingers seemed deformed, and he was sick so much of the time." Then Richard's infant brother, Xavier, began having stomach problems.

"I had the same feeling - that it had to be something more."

When the family moved to Louisiana in 1995, Sheila told her husband, Bobby, "You need to take Richard to the doctor." She thought this base physician might have a better idea of how to help. He did. He sent them to a specialist - a pediatric pulmonologist - who ran tests on Richard, Xavier and the newest member of the family, Akeem.

Sheila was unfamiliar with cystic fibrosis, and was shocked to learn that two of her boys had an incurable illness. The family learned that, as a genetic disease, both parents had to possess the particular gene that causes CF, and that such couples have a 50 percent chance of bearing children with the disorder.

The treatment for Richard and Xavier has been effective, but is demanding. Richard must use a special chest percussion machine three times a day to keep his lungs clear, a nebulizer machine three times a day to control his asthma, and a host of medications to aid in digestion as well as to help with his breathing. And there are ups and downs. Richard was hospitalized again in the fall for several weeks.

His experiences continue to give him ideas for how things can be even better at the new hospital, and he has ample opportunity to share these ideas. Now age 14, Richard is a member of the Children's Advisory Council, a group of patients, plus a sibling representative, who advise the hospital on ways it can continually improve.

Most of all, Richard knows the value of a place where people specialize in caring just for kids. He explained it well at the press conference. "When that's all you do, you learn what kids like," he said. "You know what's cool for a 10-year-old, and what will make a 2-year-old smile."

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