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March 22, 2014

Teen battling kidney disease hopes to help other youths with chronic conditions

(Continued)

NEW CASTLE — UNHAPPY DAYS

Grace was faced with one of her greatest challenges when she returned to her fourth-grade class at Laurel Elementary School.

“We were floored at how mean some of the kids were,” Patti said. “She weighed 54 pounds when she went to Children’s and when she went back to school, she weighed 70 due to the steroids that were being pumped into her body.

“Some of the kids who had once been her friends became bullies. The things some of them said to her were unreal, I get sick to my stomach thinking about it even now.”

Grace’s eyes filled with tears as she described some of the torment.

“There were so many rumors going around,” she said. “A couple of kids were saying I got bit by a bug. Other people said my eyes were puffy because I fell out of bed and landed on my face.

“But the worse,” she said, her voice cracking, “was the boy who asked if I was pregnant. I was 9 years old and he seriously thought I had gotten pregnant.”

It was then, though, that Grace also found out who her real friends were.

“I didn’t tell a lot of people,” she said. “I kept to myself at first because I was embarrassed and didn’t want to talk about it. But my real friends knew and they were so great to me.”

THEN AND NOW

For months following her diagnosis, Grace lived in sweatpants and smock tops because she could not fit into any of her clothes. Because of her frequent relapses, Children’s suggested Grace be given the oral chemotherapy drug Cytoxan at age 11. That helped her get on more solid ground, and the Colberts are now able to get her through her relapses at home for the most part.

Now 15 years old and a ninth-grade varsity cheerleader at Laurel High, Grace still relapses on occasion and misses an average of 30 to 40 school days a year. One of her latest episodes caused her to gain nine pounds in two days and miss the Laurel basketball team’s WPIAL playoff game in February.

“I couldn’t fit into my uniform,” she said. “I was so bummed.”

For the most part, though, Grace doesn’t miss a beat, She plays saxophone in Laurel’s concert band, is active in Student Council and does volunteer work.

She is just coming out of her most recent relapse now and has been home-schooled for the past several weeks while she recovers. She is treated with Prednisone, which suppresses the immune system and leaves patients more susceptible to infections.

“When she relapses, her life stops, our lives stop,” Patti said. “We just concentrate on getting her through it.”

The Colberts are hoping that, like Brooke Tokar, Grace is able to outgrow her illness. They have been told if that happens, it should occur while she is in her teens.

March is National Kidney Awareness Month. The National Kidney Foundation reports that 59 percent of Americans are at risk for developing kidney disease, while many have it and are unaware of it. It is a time every year that the Colberts celebrate Grace’s life.

“If I had had the disease when I was her age, I would not have made it,” Patti said. “The mortality rate was at least 50 percent before Prednisone came along. So for the advances in medicine, we are extremely grateful.”

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