Working for a wish

Lindsay Sandham

If given the opportunity to have any wish granted, most children

would ask for a pony, a trip to Disneyland or maybe even the chance

to meet their favorite celebrity.

But all Corona del Mar’s Natalie Stack wants is for her disease to

go away forever.

Natalie has a rare, incurable disease called cystinosis, which

causes a buildup of the amino acid cystine, which then crystallizes

and eventually causes vital organs to shut down.

Since she was diagnosed as an infant, Natalie, who’s now 14, takes

a drug called Cystagone every six hours. The drug was invented to

induce ulcers in rats for study; it has painful side effects,

including gastrointestinal difficulties, headaches and nausea.

Only about 500 people in the United States and 2,000 worldwide

have been diagnosed with cystinosis. Because the disease is so rare,

research funding is scarce.

Days before her 12th birthday, Natalie and her mother Nancy Stack

were having lunch at Ruby’s. Nancy Stack asked her daughter what her

wish would be if she could have any wish. Natalie was embarrassed

about her answer and wrote it on a napkin: “To have my disease go

away forever.”

Nancy Stack was so moved that she saved the napkin and later

shared it with her husband, Geoffrey Stack.

“I was heartbroken,” Nancy Stack said. “I knew it was a wish that

no 12-year-old should ever have to make.”

Although the Stacks had been making private donations toward

cystinosis research through the United Way, they realized they had to

do something more -- for Natalie and for all the people suffering

from rare diseases.

They started the Cystinosis Research Foundation, and Thursday

marks the fourth annual fundraiser, Natalie’s Wish. The event, which

will feature guest speaker Mort Kondracke, will be held this year at

the Four Seasons in Newport Beach. Nancy Stack said she expects more

than 300 people to attend.

The decision to share Natalie’s story as a way of raising

awareness was difficult, Geoffrey Stack said, because she has always

wanted to be like everyone else and has kept her disease as private

as possible.

“She just wants to be a normal kid,” Geoffrey Stack said.

In the past three years, the foundation has raised more than $1

million. The Stacks underwrite the expenses of the foundation so that

100% of donations go directly to funding research programs.

“I hope that we’ll exceed what we raised last year,” Geoffrey

Stack said. “Our real goal is to make more people aware of the need

for medical research and the need for funding, and if we accomplish

that, then ultimately the dollars flow in.”

Geoffrey Stack said the group has a board of doctors and research

scientists who review proposals and decide which programs are funded.

“They evaluate the scientific merits,” Nancy Stack said of the

review board. “We may live with the disease, but we don’t understand

all of the technicalities.”

The Cystinosis Research Foundation is currently funding programs

at UC San Diego, the National Institute of Health in Maryland, the

Medical School of Wisconsin, and Tulane University.