Marisa O'Neil
All Natalie Stack wants is to be like every other seventh-grader.
She takes dance lessons. She plays tennis. She wants to be a
teacher when she grows up.
But she's never slept more than six hours at a stretch, and on a
daily basis, she faces stomach pain that would keep most kids home
from school. And that's just from the medicine that keeps the
12-year-old well.
Natalie has cystinosis, a rare, incurable disease that causes the
amino acid cystine to accumulate in the body's cells. It affects
nearly every organ in the body, ultimately causing them to fail.
"Natalie probably has symptoms every day but doesn't let on," said
Ranjan Dohil, a pediatric gastroenterologist at Children's Hospital
of San Diego. "She just tries to be a normal girl. When I see the
inflammation in her stomach, I wonder how she's not complaining.
She's a tough little cookie."
The medicine given to cystinosis patients -- medicine that
prolongs life but does not cure the disease -- is so potent, doctors
used to give it to lab rats to cause stomach ulcers. Because it must
be taken every six hours, Dohil is researching ways to make a
time-release version.
Nancy and Jeff Stack, Natalie's parents, are helping to fund his
research through the Cystinosis Research Foundation, which the Corona
del Mar couple started to help Natalie and others with the disease.
Because fewer than 2,000 people worldwide have it, research money is
scarce.
So when three of her classmates at Harbor Day School in Corona del
Mar offered their birthday party as a fundraiser for the foundation,
Natalie and her parents were pleasantly surprised.
"In today's world, kids aren't given enough credit for their
ability to be compassionate and giving," Nancy Stack said. "What they
did was extraordinary, especially since she's not real outgoing."
Blaine Bolus, Michael Bear and Andy Morrow, all 13 and with
birthdays within weeks of each other, decided to throw one birthday
party together in September. Instead of gifts, they asked their
guests to bring donations to the foundation.
They collected $4,475.
"We already have a lot of things," Michael said. "We didn't really
think we needed presents."
The idea of helping a friend, someone they've known since
kindergarten, appealed most of all to the boys. But they still ran it
past Natalie, a shy, quiet girl who doesn't like to draw attention to
herself or her condition.
When the two were out to dinner just before her 12th birthday, her
mother asked Natalie if she had a wish. Embarrassed to even say it
