The 24-year-old Santa Monica, California, woman has Hirschsprung's disease, a rare congenital disorder that obstructs the large intestine due to an absence of nerve cells that regulate muscle movement.
She never attended public
school full time, has been in and out of hospitals since she was a
newborn, and discovered that the one thing she can eat without getting
sick is a bag of Cheetos.
Now, Pearce needs four organs -- a liver, kidney, pancreas and small intestine -- from a deceased type O donor to live.
"It's a pretty unusual
circumstance," said Dr. Alan Langnas, chief of transplantation at the
University of Nebraska Medical Center, where Pearce is being treated.
"Fortunately, she's young, and youth trumps everything. She's in very
good shape relative to her condition."
At birth, Pearce was one
of only three people in the world with her particular type of disease,
and doctors predicted she wouldn't live beyond her first year.
Growing up, "I would go
to school when I could, but I didn't know anybody and always felt left
out," Pearce said. "Most of the time I felt OK, but I was really in a
fragile state. I just wanted to be a normal kid."
Pearce managed her
disease as well as possible but experienced a major setback at 12 when
she was given a drug too powerful for someone of her size. It destroyed
her small intestine and her kidney, forcing her onto a liquid diet. It
wasn't until she was 17 that she received a small intestine transplant,
and at 18 she accepted one of her mother's kidneys.
Pearce on horseback, one of her favorite pastimes.
Then, in 2011, a
negative reaction to a blood transfusion caused widespread intestinal
failure. Doctors removed both transplants last fall and advised her that
they would have to remove her pancreas and her liver as well. By
December, she was on dialysis and had lost all four organs.
"I was so depressed that
I was telling my mother and everyone that I didn't want to live
anymore," Pearce said. "I just wanted to give up because of how many
things had gone wrong. After a few months, I realized I could either die
or try to get better -- and I at least wanted to try."
After successfully overcoming pneumonia this year, she was exposed to methicillin-resistant Staphylococcus aureus,
or MRSA, a skin-borne infection common to hospitals that is difficult
to treat. With a severely weakened immune system, she remains in an
isolation room, where is she being fed through a tube. She has not eaten
solid food since November.
"It's a complex
operation," Langnas said of the quadruple transplant, "but it's her only
opportunity for survival and a reasonably good quality of life."
The Flood sisters hope to help Pearce via their foundation.
Fortunately, Pearce and her family are no longer alone in their quest for a donor. The New York-based Flood Sisters Kidney Foundation of America has taken up Pearce's cause after reading about her on Facebook.
CEO Jennifer Flood and
her two sisters, Cynthia and Heather, started their organization after
finding a kidney donor for their father in 2008 through the popular
classified website Craigslist. They have since capitalized on the power
of the Internet and social media networks such as Facebook and Twitter
to give patients more publicity and pair them with donors more quickly.
"We knew right away this
was a rare and challenging case," Jennifer Flood said. "Molly's story
reminded us of the journey we went through for our father, and we had
faith and confidence in knowing we could help."
The foundation educates
the public on the organ donation and transplant process through online
efforts as well as at fund-raising events around the country.
The Flood sisters have saved six lives so far -- and they said they hope Pearce is next.
"It has been a unique,
eye-opening, challenging and empowering experience," Jennifer Flood
said. "We are confident that with more awareness and exposure ... we can
help Molly receive a special family or individual to come forward and
donate the gift of life."
Typically, patients seeking organ transplants register as candidates for the national waiting list through the United Network for Organ Sharing
after receiving medical clearance from their hospitals. They can either
attempt independently to find a family member, friend or stranger to
donate to them, or they can wait their turn on the list.
Cases are reviewed based
on how sick a patient is, but even though someone such as Pearce is
near the top of the list, about 117,000 other patients vie for potential
donations, according to United Network for Organ Sharing. The process
can take anywhere from two to 10 years.
The Flood sisters help
patients expedite that waiting period by providing them with a list of
potential donors, helping them choose the right hospital and referring
them to organizations that can assist with medical expenses. Once
matched with a living donor, a patient contacts his or her hospital, and
the transplant occurs once the donor has been medically cleared by a
series of tests.
Patients who need the
organs of a deceased individual must also wait on the list, as United
Network for Organ Sharing determines where to allocate these organs.
But patients can take
the initiative to find a family with a terminally ill loved one and have
them consent to donate that person's organs after he or she has died --
an option the Flood sisters are exploring for Pearce. Many people are
unaware of that option, so it doesn't happen often.We hope that Molly's
story is the first step toward changing how families can choose where
their loved one's organs are allocated," Jennifer Flood
said. "It is such a confidential process when it doesn't have to be.
This new procedure can make a family or individual feel empowered and
not directed to a system. It makes the donation process more
personable."
Pearce's mother
describes her daughter as a bright, inquisitive young woman whose
resilience has always belied her physical condition.
"She has a tremendous
love for animals -- she's shown horses and done a lot of work at
shelters," Melisa Pearce said. "She has never seen herself as weak --
she has always been the person who fights for the underdog."
Molly Pearce's boyfriend
of four years, Corey Eaker, stayed with her in the hospital for a month
over the holidays. A geography major in his final semester at
California State University, Northridge, he met Pearce when they were
both enrolled at Santa Monica College.
"It was tough to be
there and see everything that she was going through," he said. "We're
pretty positive, but we always look at the other side a bit and think,
'What if?' And then we use each other to remind ourselves that we can't
think about that and to keep a positive outlook."
Pearce said the support
from her family, as well from as strangers who have written to her after
reading her story, has been overwhelming.
"I'm hopeful," she said. "We did it once, and I'm determined to do it again."
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