GIVING TO A FRIEND

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

out loud, she scribbled it on a napkin.

“To have my disease go away forever,” she wrote.

Her parents have recently encouraged her to be more open about her

condition, to help people understand more, to put a human face on it

and maybe to help others with the disease.

“I can’t imagine how hard it is,” Andy said. “If you have stomach

cramps all the time, it must be hard to put on a good face.”

Natalie tries so hard to blend in at school that even her teachers

didn’t know until they were told.

“She’s amazing,” social studies teacher Susan Johnson said. “She’s

one of the hardest working students. She always has a smile on her

face and handles it so gracefully. She’s always an inspiration.”

But Natalie doesn’t know any life other than her life with the

disease. Her parents adopted her as a healthy infant, but doctors

discovered a tumor on her liver when she was just 2 months old.

Doctors removed the benign growth, but discovered she had a rare

kidney disease called Fanconi syndrome, which often accompanies

cystinosis. She was diagnosed with the disease soon after.

“I’m used to it now,” Natalie said. “I’ve had it for a long time.”

School, her mother said, is Natalie’s saving grace, a place where

she can put her condition out of her mind, at least temporarily.

“School is safe,” Nancy Stack said. “She feels if she can perform

well and get good grades, she’ll be like everyone else. Just Natalie

the seventh-grader.”

The Stacks are hoping that the donations from their foundation can

help improve the quality of life for Natalie and others. Yet through

all the discomfort, the endless doctor’s visits, needle pricks and

pills, Natalie keeps a positive attitude.

“She once told me, ‘It’s OK, Mom,’” Nancy Stack said. “‘Everyone

in life has something that’s not great. This is just mine.’”

* MARISA O’NEIL covers education and may be reached at (949)

574-4268 or by e-mail at [email protected].