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Children on Dialysis Maintain Hope Despite Difficulties


The United Network for Organ Sharing reports that more than 73,000 Americans are on the waiting list for a kidney transplant. Most of them suffer from kidney failure, or end-stage renal disease. Kidney disease most commonly affects adults, but many children suffer from it, too. VOA's Alex Villarreal reports from Washington, D.C.

At first glance, Daniela Joya, 13, does not look like she spends three days a week in a hospital. But until she gets a new kidney, she has no other choice.

Daniela is one of 35 children on dialysis for kidney failure at the Children's National Medical Center in Washington. She explains her routine: "Today I received dialysis…Monday, Wednesday, Friday...and they have to stick me with needles."

Dialysis is a treatment used to perform the functions of healthy kidneys. Daniela and some of the other Children's patients go to the hospital three times a week for their treatments. They are hooked up to a machine that removes waste and extra water from their blood, just like healthy kidneys do. Each session lasts up to four hours.

"Dialysis takes a lot out of our patients. You know, it's a big chunk out of their lives. They're missing school, they're missing a lot of the social activities, they're not able to eat and drink a lot of the things that all their friends do," says Kathleen Moylan, Clinical Manager of the hospital's dialysis unit.

Daniela says the toll on friendships is difficult to overcome. "It's hard, because when I go to school, all the friends I had, they don't talk to me, so they just say, 'Why don't you come everyday?'" she says. "And I don't know how to explain, because they don't know [anything] about kidney failure."

These struggles trigger a range of emotions, says Moylan. "There's denial, there's anger, there's anxiety, there's stress," she explains.

But on this day, the dialysis patients at Children's added a different emotion to that list.

The center hosted a fashion show called "Gowns with an Attitude." The event allowed the children to model their own hospital gown designs while raising awareness for organ donation.

Judy Ross specializes in child development and mental health at the hospital. She says she started the fashion show to give the kidney patients a positive experience. "They're doing something fun. They're coming here not for their treatment, but to the hospital for something that's just for them, something that's enjoyable, and something that they have created and they have a voice in," says Ross.

As Daniela pranced down the runway, it was easy to see the effect on her. "This gown project has given her so much joy and confidence and so much fun," says Ross.

Another model, Salematou Traore, also showed a triumphant smile to the crowd. Traore is a former dialysis patient. She was 14 when she learned she had kidney failure. She says it took her a while to come to terms with it. "I was sad for a while, that my life changed so fast and so soon," she says.

After four years on dialysis, Traore got a new kidney from her cousin. She wants people to understand the transplant's importance in her recovery. "Consider being an organ donor. They label it as life-bettering, but for me, I know that it saved my life, because I didn't know how much longer I would have been able to be on dialysis and stay alive, or stay healthy on dialysis. So, just consider it," she urges as she begins crying.

Ross says Traore is an inspiration for children still waiting for a transplant.

"I just say to myself, 'I know I'm gonna get a transplant, I know I'm gonna do better,'" says Daniela Joya. Until then, dialysis will keep Daniela and her hopes alive.

Moylan says children can wait up to three or four years for a transplant. In 2005, the United Network for Organ Sharing adopted a policy putting children ahead of adults on the waiting list for kidneys from deceased donors under 35. The network says children have received transplants more quickly since the policy took effect.

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