New Castle News

March 22, 2014

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

Kayleen Cubbal
New Castle News

NEW CASTLE — Patti Colbert was standing in a local pediatrician’s office Sept. 11, 2008, when she got the words no mother wants to hear.

“Do you know how to get to Children’s Hospital in Pittsburgh?” the doctor asked, a solemn look on his face.

Thus began an odyssey that has spanned nearly six years and had its share of both heartbreak and hope for the Colbert family of Slippery Rock Township.

It is a story that brought Grace Colbert from the brink of death to a future full of promise.



THE BEGINNING

Grace and her fraternal twin, Tara, were born eight weeks premature on Jan. 23, 1999, to Patti and Bob Colbert.

Tara, who weighed 3.7 pounds at birth, spent five weeks in the hospital, while Grace was hospitalized for six weeks.

“When I had my sonogram, we were told that Grace had a line on her head and that chances were good that she would either be born with brain damage or water on her brain,” Patti said. “Grace stopped breathing and had to be put on life support, but she pulled through. That is why we named her Grace.

“Bob and I got home from the hospital with her and said, ‘wow, we paid our dues, but we’ve got two healthy kids,’ ” Patti said.

That seemed to be the case for a while. Grace took dance classes, participated in gymnastics and played the piano.

Then, when she was 9 years old, her mom noticed that the petite, blond-haired girl’s eyes looked a bit puffy.

“I thought maybe she was having an allergic reaction to something, so I took her to an allergy doctor who gave her an antihistamine,” Patti said.

Grace’s legs started to swell after she returned home, though, and her weight ballooned from 54 to 70 pounds almost overnight.

“That’s when I knew that something was wrong — really wrong,” Patti said.

Lab work was ordered and the family was summoned to Grace’s pediatrician’s office, where Patti was asked about her knowledge of Children’s Hospital.

“He said don’t make any stops, don’t go home, there is a team of specialists waiting for you,” she said. “He said it appeared that Grace had a rare kidney disease. I just started to cry. I couldn’t figure out what was happening. She had been fine a few days earlier.”



CHILDREN’S STAY

The family raced to Children’s, where they learned Grace had Nephrotic Syndrome, a life-threatening illness that  occurs when glomeruli (filters that keep valuable cells and protein in the blood), leak into the urine and the kidneys begin to shut down. In the United States, the disease affects 2.7 per 100,000 people.

Grace was put on steroids, and when she didn’t respond, a biopsy was ordered to determine if she would need a kidney transplant.

“They didn’t even have the words out of their mouths and I jumped up and said, ‘Give her my kidney, test me right away to see if I’m a match,’ ” Patti said, her eyes glistening with tears at the memory. “I would have given anything for her.”

To that point, an overwhelmed Grace had said little, according to Patti.

“I was most scared of the biopsy because I was really afraid of needles back then and I knew it was going to hurt,” Grace said. “I knew how serious it was, I just didn’t want my mom to see that I was scared because I didn’t want to worry her any more than she already was.”

Patti, meanwhile, said she was torn apart inside.

“Grace never said it, but I think she could tell by what was going on around her that she might not make it,” Patti said. “There was really no way to keep it from her with the franticness of the situation surrounding her.”



CHURCH FRIENDS

The Colberts drew strength from their church, New Life Baptist of New Wilmington, during Grace’s 17-day stay at Children’s.

“Our church was of tremendous support to me,” Patti said. “Not a day went by that someone from our church didn’t make the drive to Children’s to sit with us and pray with us.

 “One of the first people I heard from was Nanette Bailey, the wife of our pastor (John Bailey). I found out their daughter (Brooke Tokar), who is in her 30s with five beautiful children, had Nephrotic Syndrome when she was a child and she outgrew it and is healthy and thriving now.

“That meant so much to me, just finding out that there was one person out there who had this disease and had pulled through.”

The Colberts got good news when the results of the biopsy came back, revealing that cells had not been damaged to the point that Grace would need a kidney transplant.

Still, her road has been a rough one. Although drugs put her into remission, she has relapsed often, meaning more trips to the emergency room and admissions to Children’s.

Patti and Bob were taught to test Grace’s urine when she began to show signs of puffiness and the color of the test stick — yellow, green or the dreaded blue — told them if she was in kidney failure.

“We just learned to keep an overnight bag packed,” Patti said. “We never knew when we had to head to the ER or the hospital.

“If she gets an infection, it can go septic and she could die. We cannot take any chances.”



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.”



GROWING UP FAST

Grace now makes the majority of her decisions when it comes to her treatment.

“She has educated herself and knows as much about it as we do,” Patti said.

Grace has agreed to try a new drug called Rituximab, which will be given to her intravenously in a one-time, six-hour treatment. She hopes that will help put her into remission.

She has given up gluten, dairy and sodium and makes much of her own food — kale chips are her favorite — to keep herself healthy.

Grace has put together a guide called, “Living with Nephrotic Syndrome,” which explains the disease and what to expect to patients and parents. She hopes to have it printed soon.

“I didn’t have anything like that when I got sick and it would have helped,” she said.

She has decided to start a ministry to help young people struggling with chronic illness and other issues.

“I was listening to our youth pastor (Steve Mikulski) speak and he asked each of us what we would do for a ministry,” she said. “And all of a sudden I realized — I have something to offer because of what I’ve been through. I told my mom, I know what my purpose is. I’ve always had self-image issues and I plan on meeting with young people who are going through the same things I went through.

“I got to thinking,” Grace added, “what if all things really do happen for a reason and the reason I got this disease was because God knew I was strong enough to get through it and that I could use the knowledge I have gained to help other people though issues they are having.”

Patty said Grace’s grit has renewed her determination to get past her disease.

“She feels like God has a purpose for her. And so do we. God spared her for a reason and we now think we know what it is.”

(Email: kcubbal@ncnewsonline.com).