“There’s me giving him a
high-five,” Zackary said pointing to a picture of him and Buzz Lightyear.
Buzz,
the character from Disney’s Toy Story, is the Disney star he was most excited
to see during his trip to Disney World last year.
Zackary flipped through each
page in the album his mom made, giving extra commentary when he came to photos
of his favorite rides and Disney characters.
Zackary loved the Tower of Terror
ride and the ride that let him pretend to drive a car.
The whole McGowan family —
two sisters, a brother, mom (Patsy) and dad (Scott) — joined Zackary for his
trip to Disney World, made possible because of the Make-A-Wish Foundation.
At two months old doctors
diagnosed Zackary with neurofibromatosis (NF), a genetic disorder that causes
tumors to grow on nerve endings anywhere in the body. Zackary’s tumors, two of
them, are on his brain. For Zackary, now eight years old, the disease is
terminal. Zackary has already lived longer than doctors anticipated.
Living with NF means Zackary
tires easily and sometimes uses a wheelchair. Visits to the doctor for MRIs and
other procedures are common for the McGowan household. Seizures are nothing
unusual for Zackary. While Zackary is often in a lot of pain, he rarely asks
for pain medication. Mom and dad know when he does ask, the pain is at its
worst.
Since Zackary is very
sensitive to light, temperature changes and loud sounds, the McGowans brought
the outdoors indoors by putting a swing and a slide in Zackary’s room.
Scott and Patsy are honest
with their children, and with Zackary, about the severity of NF. “He knows
everything,” Patsy said. At age 8, Zackary knows that no one is really sure how
much longer he has to live.
The fear of death has not
crippled Zackary. Just a few months ago Zackary’s army tank won Best in Show at
the state Royal Ambassador (RA) Racer Day at First Baptist Church in Salisbury.
Contributed photo Zackary McGowan, left, with Rodney Poston, RA director at Mount Sinai Baptist Church in Shelby. Poston was one of the volunteers helping during RA Racer Day. |
“He wanted to make something different from everyone else,” Scott said. Dad
helped with some of the gluing, but other than that, the tank is all Zackary.
Twenty hours worth of work to earn Best in Show.
Zackary enjoys participating
in RAs at First Baptist Church in Mebane because “they talk about the Lord.”
Talking about the Lord is something Scott and Patsy say their son has always
been doing, for as long as they can remember. In fact, it’s because of Zackary
that the McGowans started going back to church after being away from church for
awhile.
Zackary wants to help
others. He participates in service projects with RAs, such as making care
packages for shut-ins.
He also raised money for
Songs of Love, a nonprofit organization that creates personalized, original
songs for children and teenagers with a life-threatening illness. Zackary got
inspired to help when he received his own song from the group.
Earlier this year Zackary
was baptized at First Baptist. Scott remembers the day when Zackary went to
talk to the pastor about being baptized. “He was so weak that day,” Scott said.
Scott wanted to carry his
son down the aisle, but Zackary insisted on doing it himself, even if it meant
holding onto the pews to get there. “He said he wanted to be baptized before he
died,” Scott said. Zackary’s family, doctor, dentist and school teacher all
attended his baptism.
Scott understands some of
what his son endures on a daily basis, as he also lives with NF. Scott battled
acute leukemia for about 10 years as a child and was diagnosed with NF at age
12.
Although not as severe as Zackary’s case of NF, Scott has his own
challenges. The disease has gotten worse in recent years, forcing Scott to quit
work and have his driver’s license revoked. His memory is getting worse and so
is his reading ability.
For Scott, on a bad day the
pain is like having needles all over his body. “I don’t know how Zackary deals
with it,” he said.
In 2004, Patsy quit her full
time job so she could devote her time to caring for her family. Although it’s
close every month, and not much is left, if anything, the bills get paid and
the Lord provides.
On June 19, the McGowans are
hosting a Ride for Life to help raise money for medical treatments for Zackary.
Zackary is already hard at work himself, contacting classic car owners and
motorcycle riders and asking for their participation. For more information call
(336) 512-7045 or e-mail [email protected].
The McGowans do not know how
much longer they have to spend with Zackary, but the uncertainty of the future
does not cloud their joy for living now.
They have learned to be
thankful. Every morning when they wake up and hear Zackary say “good morning”
they are reminded to be thankful.