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: 2-25-03 RENO GAZETTE-JOURNAL | 12-29-02 NEVADA APPEAL

Former Carson City girl still fighting for her life

LYNN GILES
SPECIAL TO CARSON TIMES
Posted: 11/9/2007

 

Amanda Stewart is a 12-year-old young girl who has had the fight of her life for the past five years. She has been living with a rare, life-threatening disease, Nephrotic Syndrome.

Then, in February of 2007, Amanda's transplanted kidney was removed and she is currently awaiting a second transplant.

To help raise funds to help the family with medical expenses, a children's book was written about Amanda. It has some quirkiness, great ideas, a tight mystery plot and lots of butterflies.

"Amanda's Butterflies," written by Amanda's mother Tracey Paul and Lynn Giles, is set in a school playground, and features a strong, smart, resourceful butterfly-loving rabbit, Amanda Bunny.

The book, which is beautifully illustrated by Jack Kraske, is about a bunny who is "different," but desperate for friends and who only wants to be included. Amanda finds other animals that are left out because of differences of their own. 

Amanda Bunny and her friends -- with the help of some beautiful butterflies -- help all the little animals to see how they are alike rather than different. 

This book was written to relate to all children with challenges like those Amanda has experienced while attending school (when she could) and fighting her illness.

The message of the story is that while some children can be cruel to others who have differences, Amanda was able to move on from her experience.

Some of the characters in the book are loosely based on children Amanda met while in the hospital. The three-legged giraffe represented a friend who had to have his leg amputated. The yellow and black zebra was another friend who had liver damage. Everything in the book-- from the names to the butterflies -- have a special place in Amanda's life.

Amanda, who was a resident of Carson City, followed her doctor to Loma Linda Medical Center in San Bernardino, Calif., where she now lives with her family.

Amanda's illness requires her mother's care around the clock. Tracey, with the help of her husband, their other daughter with her own medical illness, and their combined family of six children have managed to stay strong throughout the ordeal.

Their faith, family, friends and the kindness of strangers have made difficult times easier to get through.

Amanda Stewart, 12, reads to her siblings from the book written about her to help raise funds for her medical expenses for a rare disease.

From the July 13 , 2005 Nevada Appeal

Girl waiting in limbo for medical research that may save her life

With money, doctors can research a 10-year-old's rare kidney disease by studying her twin sister

by Maggie O'Neill
Appeal Staff Writer

One semi-functioning kidney and a lot of hope keep Amanda Stewart alive.

But the kidney isn't doing so well, and the hope is bankrolled in experimental research $97,000 away.

"If she loses the kidney, she'll be on dialysis for the rest of her life," said family friend Lynn Giles. "The best possible outcome for her is that she could live until 35."

To begin the experimental research and find out why nephrotic syndrome, a disease which attacks the kidneys, is at work in Amanda's body, the family needs to raise $100,000.

The research will be done on the 10-year-old's identical twin, Jessica.

Amanda, who was diagnosed with the disease in spring 2002, once attended Seeliger Elementary School with Jessica and older brother, Jacob. Amanda's grandparents still live in Carson City.

Amanda's Linda Loma, Calif., doctor hopes to compare proteins in the girls' bodies to see what has gone awry in Amanda's. It is not clear what the disease is nor how exactly it spreads.

Giles, a friend of Amanda's mother since seventh grade, has a theory though.

"For some reason, every kid who has this seems to have experienced a really bad case of the flu or the strep throat," she said. "For some reason, that lowers their immune system and the disease just awakens."

Amanda had a severe case of the flu before being diagnosed with nephrotic syndrome, she said. "Nephrosis" refers to the kidneys.

"There's a doctor who has done this type of research for adults," said Giles. "It has not been done on children. In this case, it can be done especially for Amanda to compare her twin to her."

The Stewarts recently followed their doctor from Lucile Packard's Children's Hospital in Stanford to Linda Loma University Children's Hospital, both in California.

"The faster we get the money, the faster they'll be able to do the research that they need and possibly find a cure and work with the existing kidney," Giles said. "The longer we go, the better chance we have of losing this kidney."

Amanda responded to the typical treatment of Nephrotic Syndrome by having seizures to the steroids. She has been exposed to carcinogenic medications in a search for treatment.

Seven months after her initial diagnosis, doctors removed both of her kidneys, which had becoming excruciatingly painful and doubled in size. Five months after that, she received a kidney transplant. Her body began attacking it the day after surgery. Her growth has been stunted, she is often puffy from medication, and she is in and out of the hospital.

Last year Krystine Redmond, then a 9-year-old fifth-grader at St. Teresa of Avila School, organized a penny drive to help Amanda. Krystine, who suffers from the same disease but has progressed to live a functional life, raised about $4,000.

And 1 1/2 years later, Amanda's kidney is functioning with the help of a dialysis-like process that cleans out the organ three times a week. If the kidney fails, the 10-year-old will be put on dialysis.

"I don't think they'll give her a new kidney," Giles said. A little more than $3,000 has been raised in the past months. Insurance does not cover the research.

- Contact reporter Maggie O'Neill at moneill@nevadaappeal.com or 881-1219.

 

For more on Amanda, see the Web site amandas-story.org.

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From the February 23, 2004 Nevada Appeal

School raises $4,000 to help Carson girl with kidney disease

by TERI VANCE

At last count, students at St. Teresa of Avila Catholic School had raised about $4,000 - that's 400,000 pennies - in their penny drive to help a Carson City girl who has a kidney disease.

"A lot of people and the students really identified with this little girl," said Jenny Rich, a parent volunteer at the school.

Fifth-grader Krystine Redmond spearheaded the drive, which ended Friday, to help 9-year-old Amanda Stewart, who recently received a kidney transplant.

Krystine and Amanda met while being treated at Lucile Packard Children's Hospital at Stanford University for nephrotic syndrome, the kidney disease they both have.

Although Krystine is able to lead a nearly normal life, Amanda's disease has progressed at a much more rapid rate.

"I feel really sorry for Amanda," Krystine said when the drive began. "It could be me. I just think if it were me, I would like people to help me."

So Krystine decided to help Amanda, and her classmates joined the effort. After an article appeared in the Nevada Appeal, several members of the community also donated money, including one man who wrote an $800 check.

Many also contributed on Amanda's Web site, amandas-story.com.

"We were very surprised," Rich said. "We couldn't believe that people would just read it in the paper and that they would care so much."

Lynn Giles, a close friend of Amanda's mom, Tracey Stewart, said the family appreciated the community's outreach.

"She was just so touched," Giles reported. "She had no idea Krystine had taken it to this extent."

Amanda's surgery a little more than a week ago was successful, but complications have ensued. Preliminary reports show the disease may have returned.

"Amanda's pleasant, but she's angry about having to be on the feeding tube again and angry because it's not all better," Giles related. "She's her normal feisty self, and she just wants to get on with her life."

Rich said there are still more pennies and other change to count before the total is delivered to Amanda and other charities.

The pennies were counted at Cactus Jack's Casino in Carson City.

"We're so grateful to them for doing it," Rich said. "So many other casinos don't want to bother with our little pennies."

Contact Teri Vance at tvance@nevadaappeal.com or at 881-1272.

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From the: 2/20/2004 RENO GAZETTE-JOURNAL

Little girl fights for her life

Sandi Wright
RENO GAZETTE-JOURNAL
2/20/2004 12:35 am

David. B. Parker/RGJ Tracey Stewart, right, of Carson City has had to deal with many problems since Amanda, left, 8, became ill. Her other children are, Jessica, also 8, and Jacob, 10.

A 9-year-old Carson City girl with a rare kidney disease is fighting for her life this week at a Stanford University hospital, and local elementary school students are raising money to help her.

Amanda Stewart was 8 when her life changed. She became violently ill and was diagnosed with nephrotic syndrome, a rare form of kidney disease, said Debi Redmond, a close friend of the Stewart family.

St. Teresa of Avila School in Carson City has selected Amanda as a recipient of its annual penny drive. All the pennies aren't counted yet, but so far the school has raised nearly $3,000 to help the Stewart family with Amanda's medical expenses, penny drive organizer Jenny said Thursday.

“We have people coming off the street to write us checks,” Rich said.

Redmond's daughter, Krystine, said she wanted to be involved in helping Amanda because she also has nephrotic syndrome.

“I care because she's my friend. We're both little girls, and we both have this, only she has it a lot worse than I do,” Krystine said.

Standard steroid treatments used to fight this type of disease did not work for Amanda, and in October 2002, both kidneys were removed.

Last week, there was reason for hope when Amanda received a kidney transplant, but her body is not responding as everyone, including her doctors, had hoped, her grandmother Pat Fox said.

“There have been complications since the transplant; they don't know why. She had to have emergency surgery the next day,” Fox said.

“We don't know if the body is rejecting the kidneys or if the disease is attacking the new kidneys. It destroyed both of her own kidneys,” she said.

Redmond, who became acquainted with Amanda and her mother, Tracey, while at Stanford, said the latest news is heartbreaking.

“I just got off the phone with her grandmother and she had me in tears,” Redmond said.

Redmond's daughter Krystine, 11, not only has the same disease, but both girls have the same doctor at Packard Children's Hospital at Stanford and the same pediatrician in Carson City.

The difference is that Krystine's problems were discovered when she was 2, and she has responded to treatment, so the disease is under control, Redmond said.

“Amanda didn't find out she had the disease until a couple of years ago. I've been dealing with this for nine years, but Amanda's (case) just escalated immediately. She was having seizures and not responding to any of the medications, and now this,” Redmond said.

“I know it's been really hard on Tracey. She feels like she's hardly seen her other two kids in about two years. She's a single mom, so I know how much she appreciates her parents helping her out right now,” Redmond said.

Fox and her husband, Dave, have been caring for Amanda's twin sister, Jessica, and her 11-year-old brother, Jacob, during the past two years. Amanda and her mother have spent a majority of their time going back and forth between Carson City and Stanford.

“Every day you just get up and keep doing what you do. You keep your family going, pray for the best and hope for the best,” Fox said.

But Amanda's illness has frustrated doctors, as well as family and friends.

Steroids, which typically put the disease into remission, have not worked for her. Chemotherapy hasn't worked, and her condition has steadily worsened, Fox said.

Amanda probably is more discouraged than anyone, she said.

“She is very frustrated and very sad. She wants to come home and have a normal life. She misses her sister and brother, she misses her dog, and she misses school. She said she wants to play soccer,” Fox said.

Redmond said the penny drive concludes today, but help will continue to be accepted for Amanda.

“We call it a penny drive, but we'll take any money to help them,” she said.

To learn more about Amanda Stewart's battle with kidney disease, to send her an email or help with her expenses, log on to her Web site at www.amandas-story.com

For more information about nephrotic syndrome, go to www.nephrologychannel.com/nephrotic

To donate to the fund for Amanda Stewart, call Debi Redmond, 884-2419.

Copyright © 2002 The Reno Gazette-Journal

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From the: 2/2004 Nevada Appeal

Krystine Redmond lives about as full of a life as any other 11 year old. She plays basketball, does Tae Kwan Do, enjoys horseback riding and has a lot of friends.

But she knows she's different than most kids her age.

"I kind of feel like a have a regular life - it's just not like other people, " Krystine said. "They have a regular body. But I don't. I have kidney problems."

Until last year, she felt alone in her disease of Nephrotic Syndrome where the kidneys don't properly process protein in the blood.

She takes several different kinds of medication throughout the day and goes in for blood tests about once a month.

Then she met another Carson City girl, Amanda Stewart, 10, who suffers from the same disease. Both girls have the same doctor at Lucile Packard Children's Hospital at Stanford University and the same pediatrician in Carson City .

Some consider it a coincidence, Krystine's family sees it as a miracle.

"We knew each other in a kind of way," Krystine said of their first meeting at the hospital. "We know what's happening to our bodies and what could happen if something goes wrong."

And things have gone wrong for Amanda. Her disease has progressed more rapidly. She has spent the last two years living in the hospital and is scheduled to have a kidney transplant Monday.

"I feel really sorry for Amanda," Krystine said. "It could be me. I just think if it were me, I would like people to help me."

So Krystine is calling on her classmates at St. Teresa of Avila School to raise money to help Amanda and her family. The school will run a penny drive from Friday to Feb. 20 as one of the schools monthly service projects.

"I hope we can get a lot of money to help Amanda all through this stuff," Krystine said. "I hope she comes out like normal, she just has to take a lot of medication but can go to school and have lots of friends."

And Krystine's classmates are eager to help. Although the drive has not yet started officially, several of them have already started to bring in their donations.

"I just wanted to help someone in need," said Elizabeth Bennett, 10. "Knowing Krystine has the same problem, I wanted to help even more."

Contact Teri Vance at tvance@nevadaappeal.com or at 881-1272.

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From the: 2/25/2003 RENO GAZETTE-JOURNAL

Amanda doesn’t like it when people stare. Sometimes they stare because of her feeding tube. Sometimes they stare because she doesn’t look well. Amanda thinks they stare because she’s “different.” She knows the feeling all too well.

“ I know that people stare at me,” said the 8-year-old. “I just ignore them.” It wasn’t that long ago that Amanda didn’t mind attention. Just last year, Amanda was a typical 7-year-old, said her mom, Tracey. Tracey recalls her daughter being an achiever, popular, sweet, generous, down-to-earth and always happy to please people. Back then, Amanda would’ve loved to be different. You’d want to be different, too, if you had a twin sibling — in Amanda’s case, sister Jessica.

But early last year, Amanda’s world drastically changed, and the months that followed would test not just this young girl’s resolve but also the bonds that tied her family together. It started with stomachaches. Then, during a trip to the park on Easter weekend, Stewart noticed something: Amanda’s ankles were swollen to the size of her thighs. On April 1, Amanda was diagnosed with nephrotic syndrome, a complication of kidney disease.“ I was floored,” Tracey said. “It’s a parent’s worst nightmare. You don’t ever think anything will happen to your child.”

Amanda’s kidneys were removed. But the steroids she took to treat the nephrotic syndrome caused her to have severe, damaging seizures, Tracey said. Tracey found herself thrust into the unenviable world of families with chronically ill children.“ I left my school, I left my job,” said Tracey, who accompanied Amanda to Packard Children’s Hospital at Stanford University on CareFlight. “I just had to pick up and go.”

Picking up and leaving, however, wasn’t that easy. Tracey was divorced from the children’s father. There was the matter of Jessica — who didn’t develop the condition her twin did — and brother Jacob, now 10. Tracey’s parents would end up taking care of them while she and Amanda were gone, but she knew that wasn’t the same as being with their mother.“ I need to let them know that I love them all the same,” said Tracey, who barely saw her two other kids for nearly a year. “But right now, Amanda needs me the most. “ It doesn’t mean I love her more. It’s just hard.”

A balancing act

For parents with a chronically ill child, every day comes with new meaning. First is the fear of what bad news each new day may bring. Then there’s the delicate balancing act they need to perform with their other children.“ It’s really a challenging situation,” said David Margolis, a marriage and family therapist with Washoe LifeSkills, which offers inpatient and outpatient services for people facing issues such as alcohol and drug abuse, and emotional problems.“ Certainly, a child’s illness affects the entire family. Sometimes, brothers and sisters feel neglected, and there are adjustments to make for the kids to learn to live with this brother or sister who has a chronic illness.”

Stewart’s experiences echo Margolis’ comments. When Amanda was first diagnosed, her siblings couldn’t comprehend all the attention she was getting, from the stuffed animals from friends and relatives to the constant attention from her mom.

Once, while sledding, Amanda and Jessica collided. Jessica ended up with a fat lip, but Tracey’s first reaction was to check Amanda — who had catheters attached to her body. Jessica took that as a sign that her mother loved Amanda more. “They both know that their sister has this horrible disease,” Tracey said of Jacob and Jessica. “But then they see that she’s getting all this attention. “I’ve made three trips home (in the last 10 months) … it’s like their mother is being taken away from them. They think she’s taking me for herself.” Then there’s the guilt. No one in the family is immune. At one point, Amanda thought she got her condition either because God was punishing her or because of something she did. Amanda used to love salty food. People with her condition are advised to avoid salt.“ She said, ‘Mom, this is my fault. Two weeks ago I had a pickle,’” Tracey said.

Amanda’s brother and sister feel guilty, too. As Amanda’s identical twin, Jessica often wonders why Amanda is sick and she’s not. This type of “magical thinking” is common among children, Margolis said. Depending on their age, children tend to think that they may have caused a condition, whether it’s a sibling’s or their own. It’s also common for children to worry that they will get the disease, or wish that they would so they could get the same attention, Margolis said.

To help ensure that these children get the proper attention, it’s important to look out for signs that they may be having difficulty. Parents need to pay extra attention to kids ages 2 to 4 because they can’t express themselves as well as older kids, Margolis said. Younger kids, for example, usually express problems through non-verbal means such as playing.

Signs to look out for include anxiety, depression, withdrawal and anger. Some children display uncharacteristic behavior, lose interest in things they normally enjoy or get lower grades. “Some children may get rebellious,” Margolis said. “Others may blame themselves and may start displaying unusual ways of attracting attention. Some kids, on the other hand, may try to be a hero to their family and take extra responsibilities, but then push themselves too hard.“If some of this occurs, you may want to seek some professional help.”

Taking time

Not every family with a chronically ill child will require professional help, Margolis said. Sometimes, all that is needed is quality time. Parents should always try to spend as much time as they can with their other children, Margolis said. Besides doing activities together, it’s important to talk to them about any issues they may have. They may not be adults, but kids still need honest information about the illness their family is dealing with, Margolis said. They deserve to have all their questions listened to and answered. This is especially important for younger children, Margolis said, who may use that “magical thinking” to come up with answers to their questions — answers that may not be as healthy.

Although having a sick child in the family is a traumatic experience, families that get past the initial feelings of shock and disbelief often begin to develop a resilience and confidence they weren’t aware they had before, Margolis said.“ Out of tragedy, sometimes, can come real insight into individual and family strengths,” Margolis said. “It’s not uncommon for families, once they adjust, to become closer.” Amanda is a perfect example, Tracey said. Despite her difficulties, she still hasn’t lost hope; she still says grace before meals and always prays before she goes to sleep, always including her mom, “Jessica, Jacob, her grandma Pat and her pop in all her prayers,” Traceysaid. Amanda’s prayers show a crucial element for any family going though difficult times: support. Not every family will need professional help, Margolis said, but every family can always use support.

Unfortunately, it’s common for people in tough situations to avoid seeking support because they don’t want to burden other people. Some think that strength means being able to face problems on their own.

Usually, though, this type of thinking can lead to burnout, Margolis said. That’s why it’s important for people to seek support, whether it be from family, friends, support groups or agencies such as the Children’s Cabinet or Nevada Diabetes Association for Children and Adults.

One person who knows the value of having a support system is Tracey.“ My parents, my family and my church have been extremely supportive,” Tracey said. “During the times when I felt like I didn’t have the strength to carry me through, they carried me through. I was kind of in the palms of God’s hands, and it’s just nice to know that everything else was taken care of.“ (Recently), we’ve just been through another difficult time and I’m still dealing with that. But I think you get a little bit stronger as time goes on.”

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From the 12-29-02 NEVADA APPEAL:

Carson 8-year-old has kidneys removed

By Karl Horeis, Appeal Staff Writer
December 29, 2002

But little Amanda is a "pleaser" and denied there was any problem. When the school nurse noticed swelling, Amanda's mom, Tracey, figured it was just allergies.

One day late last March, Tracey Stewart took Amanda and her identical twin, Jessica, to play at the park.

"It was sunny so I had them in shorts," explained her mom. "Seeing her next to Jessica, with her legs swollen, there was no doubt. This was not allergies."

On April 1, Amanda was diagnosed with Nephrotic Syndrome, a rare kidney disease which blocks the retention of proteins.

During the last 10 months, the second grader has endured incredible hardships. Amanda and her mom have had stay near Lucile Packard Children's Hospital at Stanford University for more specialized care than is available in their home town. Amanda has become so swollen at times that her mother could not get her arms around her. She has gone from a size 6 to a size 12 and back. She has faced seizures, dizziness and vision problems as well as infuriating pain.

While most children with Nephrotic Syndrome respond to oral steroid therapy to put them in remission, Amanda has proven to be extremely resistant to all treatment and sensitive to the toxic medication.

Facing death, her kidneys, which had swelled to three times their normal size, had to be removed in October.

"They had to remove them from her abdomen instead of her back where the incisions are usually made," said her mother. "There was too much of risk of her bleeding to death."

A catheter was put inside her chest after her kidneys were removed, and because of the steroid treatment her tissue was described by a doctor as being as soft as butter. That meant her incision had to be stapled together. But Amanda is a fighter, says her mom.

"She took the 26 staples out herself," she said. "The pain is bad but she can handle it if she does it herself."

In a pioneering approach to kidney transplant, Amanda will wait a year to free her body of steroids before accepting an organ donation. Her father, David, and Tracey's brother, Michael, are both possible matches. Several of their home-town residents, some who don't know Amanda or her family, have volunteered their organs.

Amanda's mom, who was getting straight A's at the local University before the sickness, says she has a lot to be thankful for.

She praised her community church, First Baptist for their emotional and financial support. She praised Dr. Peter Yorgin at Stanford, who took Amanda's twin and her brother, Jacob, home with him in a pinch.

She also thanked Amanda's grandparents, Pat and Dave Fox, for caring for those two children while she is in California. The entire second grade signed a Christmas card for Amanda.

"We have just been touched by so many wonderful people, loving people," she said. "I wouldn't wish this on anyone but I'll tell you, I'm grateful. We're blessed."

Tracey hopes to move Amanda home near her elementary school after a catheter is placed in her stomach in February. At that time, her mother will do her dialysis each night for 10 hours while Amanda sleeps.

"This isn't over with yet," she stressed. "This is a lifetime deal. The next year is going to be very hard."

You Can Help

See Amanda's story, more photos and how to help on the Web at: Amanda Stewart's story: www.amandas-story.com

If you want more information please email: info@amandas-story.com