April Parker’s son Mackinley never made it to his 2nd birthday, but the impact he had in his 22 short months was significant — and, with the establishment of a foundation in his honor, will continue to be felt for years to come.
The first annual Mackinley’s Miracle Makers Foundation Golf Tournament will be held Saturday, Aug. 8, at Timberlake Golf Club, with a pre-benefit bash slated for Friday night, Aug. 7.
Mackinley Neal Hardison was born Jan. 31, 2009 and died Nov. 24, 2010. Come November, it will be five years since he passed away from Spinal Muscular Atrophy (SMA), the number one genetic killer of children under 6 years of age. Parker said she wants to raise money for, and awareness of, a serious affliction, all while fulfilling a promise to her boy.
“It was my promise to him and it was my dream to start a foundation in memory of him,” Parker stated this week. “Once I finally kind of got past that initial emotional part of grieving, I decided to start the Mackinley’s Miracle Makers Foundation. This year is going to be our first annual benefit.”
The Pre-Benefit Bash is set for 8 p.m.-midnight on Friday, Aug. 7, at the Timberlake pool. That will be followed with a golf tournament at Timberlake the next day, with a shotgun start at 9 a.m. Aug. 8.
“We’re doing a golf tournament, but we’re also going to have a mini-fair,” said Parker.
At the mini-fair, which will also take place in the area of the Timberlake pool, there will be food vendors offering barbecue, hot dogs and cheeseburgers, as well as funnel cakes, cotton candy, popcorn and snowcones. Games, face-painting and a bouncey house will be part of the festivities, as will live entertainment, with appearances by the Marksmen Quartet, Bentley & Friends, Anna from Frozen and the new mascot of Pizza Inn on tap.
On Friday night, there will be a half-and-half drawing, which will roll into Saturday, along with raffle drawings and silent auction.
Half of the proceeds from the event will go to CureSMA, with the other half being split between Camp New Hope and a newly-diagnosed child and their family to cover medical expenses.
“I really want the community to be involved,” Parker stated. “This is not just about raising money, it’s also about getting awareness out there. With it being the number one genetic killer in infants, it just really boggles me why it is not known — a lot of doctors don’t even know what SMA is.”
A genetic disease, SMA robs people of physical strength by affecting the motor nerve cells in the spinal cords. SMA affects numerous physical skills, taking away the ability to walk, eat, smile and breathe through a mutation in the survival motor neuron gene 1. In a healthy person, that gene produces a protein critical to the function of the nerves that control muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.
SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier.
It has four types (I, II, III, and IV) all determined by the age at which the patient is diagnosed. The most common and deadly is SMA type I, for those diagnosed in the first six months of life. Those infants have the shortest expected lifespan with many dying before their second birthday.
That is what Mackinley had.
“He was just a few days shy of being 22 months old,” Parker said. “Doctors had told me we wouldn’t see his first birthday and I was actually in the process of planning his second birthday when everything happened. He passed away on Nov. 24, the day before Thanksgiving that year. And my mom (Beth Horne) passed away this past year on Nov. 24, so they share their anniversary together.”
Parker actually began brainstorming the beginnings of the foundation last year, but when her mother’s cancer returned, everything took a backseat. Months after her mom passed, Parker attended SMA Family Day in February.
“It really hit me that ‘you need to get this going,’” she recalled. “I came home and started putting everything I could think of into this.”
The foundation now has a 12-member committee headed up by Parker, who has long served as an advocate for finding a cure for SMA, regularly communicating with others who share her experience. She wants to help in a tangible way those families who may be pushed not only to their emotional limit, but their financial one as well.
“We want to help those who really need that help, who are having struggles getting a van to get their child to the doctor’s office, a handicap ramp or a piece of equipment that their child’s life depends on,” she attested.
A child who will benefit from this year’s inaugural event has already been chosen, and their name will be announced during the upcoming festivities. Parker said she has been touched by the response the first Mackinley’s Miracle Makers fundraiser has received, and said it is the plan to keep the momentum going.
“This will be an ongoing annual benefit,” said Parker. “We’ll probably add to this each year. I don’t have any set goals … my goal is just to grow. We need to get the awareness out there. We’ve had an awesome response. It’s really taken off. I’ve kind of been overwhelmed. It’s gotten bigger than I anticipated, which is a good thing.”
There are a lot of clinical trials going on, Parker noted, “and we’re so close to a cure.” A cure for SMA would similarly help numerous forms of Muscular Dystrophy right behind it.
“Every little bit helps,” Parker implored.
Fittingly, August is SMA Awareness Month and Aug. 8, unbeknownst to Parker until recently, is National SMA Candle Lighting Day, during which it is encouraged to light a candle in memory or honor of a SMA child.
So, there will be a candle-lighting ceremony to close out the first-annual event Saturday, tentatively scheduled for 5 p.m.
“One of my promises to him when he passed away is that I would still be his voice and he would live through me,” Parker said. “Until I take my last breath, I will make a point to fight SMA.”
For more information, visit mackinleysmiracle.org or “Mackinley’s Miracle Makers Foundation” on Facebook, where there are also details about CureSMA and Camp New Hope. To become a volunteer, register to play or serve as a sponsor in the upcoming event or inquire about donating to the cause, contact April Parker at 910-385-1310 or email email@example.com.
Reach staff writer Chris Berendt at 910-249-4616. Follow the paper on twitter @SampsonInd and like us on Facebook.