The family of Mackinley Neal Hardison has done everything they can to provide a good life for their infant son, under the most heartbreaking of circumstances — and they are hoping others might reach out to help a young life that could be cut way too short.

Mackinley has Spinal Muscular Atrophy (SMA) type 1, which afflicts one out of every 6,000 infants across the globe. There is no known cure for SMA, characterized by degeneration around the spinal cord and resulting in progressive muscle deterioration and weakness.

The disease has proven most fatal in young children, with most not surviving beyond their second birthday without respiratory support.

Support, be it medical or emotional, is exactly what Mackinley has received from his parents, Brian Hardison and April Horne, and surrounding family since he was diagnosed April 13.

They are hoping the community might reach out a helping hand to ensure that support can continue.

Friends and family have organized a benefit to help raise money for medical costs and travel expenses that have quickly accumulated with the family’s trips to Duke Medical Center and UNC Hospitals in Chapel Hill. Proceeds from the benefit will also go toward finding a cure for SMA.

The “March for Mackinley Walk-A-Thon” will be held this Thursday, May 21 at Harrells Christian Academy. Registration begins at 6 p.m. and the walk will extend from 6:30 to 8 p.m.

The walk will take place at the football field next to the school, located at 360 Tomahawk Hwy. in Harrells. April Horne’s sister Meredith, a teacher at the school, wanted to do something to help and spearheaded the effort.

As family and friends urge others to come out on Thursday, Mackinley’s parents are preparing their young son for his first surgery. The surgery is scheduled at Duke Medical Center for mid-June and, right now, his lungs are not up to it, Horne said.

Without muscle use, the lungs begin to shut down, a main reason why respiratory problems account for the majority of deaths among those with SMA. Surgery now could be fatal, she said.

“We’re just taking it day by day,” Horne remarked. “We hate the thought of our baby going to surgery, but we are concentrated on what he needs to be healthy. Brian and I have both put our son in God’s hands and are praying for a miracle.”

Surrounded by numerous loved ones, Mackinley was born Jan. 31 booming with personality, as excited to see his new family as they were to see him. Mackinley was named after his late great-grandfather Mack Bass and has become affectionately known as “Lil’ Mack.”

Ever since he was born, he has been full of energy but was being held back by something — his own body.

“He was already trying to hold his head up,” said Horne. “About a month after he was born, we started noticing his legs were real sloppy, and he was not kicking his legs like he should.”

On April 4, they went in for Mackinley’s two month check-up and informed the doctor about their concerns. The doctor told them it looked as if the infant was suffering from “Sloppy Baby Syndrome” and may suffer from a muscular disease. He referred them to Chapel Hill.

“I’ve said that’s the longest two weeks of my life,” said Horne. “That waiting was the hardest part.”

When the appointment came around, a mother’s fears were realized. DNA testing confirmed the diagnosis of SMA type 1.

“We had never heard of it,” Horne recalled. “After the initial shock wore off, we said ‘what now?’ We were told the life expectancy is only 1 to 2 years. That’s pretty much where we kind of stopped. The news your child might not live to 1 or 2 years is very hard to take.”

As soon as they got home from Chapel Hill, Horne, Hardison and their families began to research SMA and join support groups so they could find out more about the disease and the tough road ahead. Support from family has been steadfast, Horne said.

“That has been our main lean-on,” she attested.

The support, Horne said, has been tremendous. She is thankful for all the phone calls, visits and prayers she has received and the touching messages that have been left on a website established to give regular updates on Mackinley’s health.

“It’s helped calm us down,” she said. “We just ask that everyone keeps the prayers going.”

Since the diagnosis, there have been numerous doctor visits and there are still many more on the horizon. It has also included the purchase of several pieces of equipment vital to Lil’ Mack’s life, including a nebulizer, and machines to assist with coughing, secretion, and monitoring oxygen levels.

“There’s so much equipment that’s not covered by insurance,” Horne said.

She expressed thanks for all of the businesses that have displayed pamphlets advertising Thursday’s benefit. The fliers have been disseminated around the community in recent weeks, telling the infant’s story and the plight of his family.

“We appreciate everybody letting us use their businesses to get the word out, we can’t thank them enough,” said Horne. “We look forward to seeing everyone out there on the 21st.”

Those wishing to participate can register as teams, whether families, schools or church groups, or as individuals. T-shirts, bracelets and car decals have been ordered and will be available for purchase at the event, with a portion of all proceeds to go toward research for a cure to SMA.

That is what the walk is all about, after all, the family attested. It is not just about “Lil’ Mack” and his own fight with the disease, but the countless other infants who are afflicted by the same genetic disorder, second most common behind cystic fibrosis. Horne said she can only give her son the love of a mother, and hope and pray for the best.

“Right now, the number one goal is giving Mackinley the quality of life he deserves,” says his mother. “And keeping him healthy day by day. We just want to enjoy our son and be able to take care of him.”

For more information about the March for Mackinley benefit, to inquiry about participating or to donate to the cause, contact Meredith Horne with the Mackinley Hardison Fund at 910-385-7439, or by email at meesquaredphotography@gmail.com.

To read more about Mackinley’s fight, visit www.caringbridge.org/visit/mackinley. To learn more about SMA, visit The Families of Spinal Muscular Atrophy website at fsma.org or fightsma.org.

Chris Berendt can be reached at 910-592-8137, ext. 121, or by email at sicrime@myclintonnc.com.