RA winner fights terminal disease
    June 2 2010 by Melissa Lilley, BSC Communications

    “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 daisyjean123@yahoo.com.

    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.
    6/2/2010 8:57:00 AM by Melissa Lilley, BSC Communications | with 0 comments

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