Amanda Stewart, 8, was attending second grade classes at Seeliger Elementary School in March before she was diagnosed with Nephrotic Syndrome. Now forced to live near the children's hospital at Standford University, Amanda has had both of kidney's removed. Her mother, Tracey, is there as well, keeping a constant vigil.
Eight-year-old Amanda Stewart had just come out of a 3-week bout with the flu when her mother noticed some swelling in her face.
But little Amanda is a "pleaser" and denied there was any problem. When the school nurse at Seeliger 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 Mills 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 Seeliger 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 Carson City. 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 Carson City residents, some who don't know Amanda or her family, have volunteered their organs.
Amanda's mom, who was getting straight A's at University of Nevada, Reno before the sickness, says she has a lot to be thankful for.
She praised her community church, First Baptist of Carson City 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 of Carson, for caring for those two children while she is in California. The entire second grade at Seeliger Elementary 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 to Carson City near Seeliger Elementary 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/
or mail checks to:
Washington Mutual
For the Benefit of Amanda Stewart
Account Number: 489-071992-0
16861 Bernardo Center Drive
San Diego, CA 92128