Photo courtesy of the Nguyen Family
September is a
big month for the Nguyen family of Penfield, N.Y. They will not only be
celebrating their daughter’s 8th birthday, but will also be celebrating her
two-year heart transplant anniversary ― the day she received her second chance
at life.
And starting
Sunday, the Nguyens will be closely watching the NFL on FOX games to see their
daughter in the public service announcements that will be running nationwide
throughout the season touting the mission of the Children’s Organ Transplant
Association (COTA).
COTA’s star of
the public-service announcement, Novalie Nguyen, is overjoyed to be going back
to school this month with her sister and friends, and so are her parents, Kathy
and Thanh. Just two years ago, reaching this month of milestones was only a
dream.
The first five
years of Novalie’s life were happy and healthy. She and her sister Jade were
inseparable and always on the lookout for fun. It came as quite a shock to her
parents when they heard the devastating news about their daughter’s health in
January 2009.
Kathy and Thanh
were told that Novalie had restrictive cardiomyopathy, a rare heart condition
in which the walls of the ventricles are rigid and cannot expand to fill with
blood. On that cold January day, Kathy remembers thinking that the
cardiologist’s news was completely unimaginable and impossible.
The bottom line:
Novalie needed a heart transplant to survive. Thanh and Kathy started meeting
with the specialists at Mt. Sinai Hospital in New York City to learn what the
future looked like for their family. One thing was certain: the entire
transplant process was going to be costly. Once hearing the devastating
diagnosis and feeling that there had to be something they could do to help,
Kathy’s two sisters started researching fundraising options. Their research led
them to (COTA), and they decided to share this information with Thanh and
Kathy.
According to
Kathy, “The devastating anguish and anxiety we felt with Novalie’s diagnosis
and the pending transplant placed a heavy emotional weight on us. It was hard
to even think about the overwhelming financial implications … until we found
COTA. COTA was a ray of hope for us; there is no better way to say it.”
On May 20, 2010,
Kathy and Novalie packed up and moved to Mt. Sinai Hospital to wait for a new
heart. Kathy remembers being scared, yet hopeful, about Novalie’s future.
Novalie was able to finish her complete year of kindergarten in the hospital.
And then spent the entire summer in the hospital, waiting. These were not easy
days, as Kathy recalls. Thanh remained at home, continuing to work and to care
for their other daughter. They visited often, but it was always hard to say
goodbye when they had to return home after their visits.
On Sept. 8,
2010, Novalie received her new heart. She came through the transplant well.
Four days after the surgery she was walking down the hallway guided by a strong
spirit and her desire to return home. Two weeks post-transplant, Novalie’s
tenacity paid off, and she made her homecoming trip. Amazingly, Novalie
returned to her school and reunited with her first-grade classmates in November
— just two months after receiving her new heart.
“We definitely
witnessed a miracle. A family we have never met and in their darkest hour, made
a decision to donate life. They gave Novalie a second chance at life. COTA was
a big part of this miracle — the perfect heart for our little girl,” said
Kathy.
Today, Novalie
is a third grader who can be found with Jade or her cat Pumpkin. She loves to
play outside on her swing set, and play Wii or read books inside.
The Children’s
Organ Transplant Association is a national charity that provides fundraising
assistance to transplant families. Since 1986, COTA’s priority is to assure
that no child or young adult is denied a transplant or excluded from a
transplant waiting list due to lack of funds. All funds raised in honor of
transplant patients are used for transplant-related expenses.
