If John Gafford hadn’t died on May 5, 2021, just two weeks before his 62nd birthday, he would be retired by now from his long career as an aerospace engineer. By now, more than likely, he and Leslie, his wife of 24 years, would have bought that small travel trailer they always wanted so they could fulfill their dreams of traveling anywhere they wanted to go in the United States and Canada, anytime.

Instead, Lou Gehrig’s disease stole everything from him: his retirement dreams, his mobility, his independence and, eventually, his life. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that causes the brain to lose connection with the muscles. There is no cure or treatment, and the disease is always fatal.

Instead of broadening, John’s world grew much smaller, until he spent his final months in one room of the split-level home in Mobile where he and Leslie raised three children, Marylyn, Michael and Matthew, all born two years apart. Over the years, their house had been a happy gathering place for family, friends and extended family that included international exchange students. In 2017, they’d built a new patio where John spent many nights manning the grill. For 10 years, he had played guitar in the Southern Current Band, switching to harmonica on Tom Petty covers, his favorites.

John started having balance issues in September 2018, and both the family doctor and neurologist were puzzled for months about why he kept having major falls that resulted in broken bones, lost teeth and deep embarrassment. Leslie, who works in the medical field and whose father was a doctor, knew something was wrong and kept pushing to find out what was going on. Finally, the devastating ALS diagnosis came in May 2019.

And while the family was able to keep him at home, with help from caregivers during the day while they worked, the house they lived in since 2000 was far from handicapped-accessible. Because it has three levels, the safest place for John was in the former playroom, which became his hospital room.

John Gafford loved to grill. (Leslie Gafford)

John and Leslie Gafford raised three children at their home in Mobile, where they also hosted eight international exchange students over the years. (Leslie Gafford)

Before losing his mobility and ultimately his life to ALS, John Gafford played guitar and harmonica with the Southern Current Band. (Leslie Gafford)

Life changed quickly for everyone. Once a fun-loving dad, John became trapped inside his own body. “No more tennis,” Leslie wrote in one of her many descriptive, and cathartic, Facebook posts. “No more music. No more beach days or boat days or trips to the Smokies… and yet (the kids and I) are still here, relatively healthy and energetic … and also paralyzed by this attack on John.”

The family held their collective breath to see what would happen next, putting on a brave face for him even as they mourned the things he could no longer do. His hospice nurse described the process of losing little abilities to do things for himself as “falling off the cliff” – like brushing his teeth, drinking water, strumming his beloved guitar or using the remote control to change the channel on the television. Finally, he could no longer feed or reposition himself.

And he hated asking for help. After all, he’d been the family’s rock for many years. Throughout their marriage, John got off work at 2:30 in the afternoon and came home to make dinner for the family.

“His big loves were food, music and his kids,” Leslie said. “Any combination of those would lead to good times.”

“Our amazing Angel could always make him smile,” Leslie Gafford said of John’s caregiver, Angel Springs. (Leslie Gafford)

Early on, he had adopted Leslie’s philosophy of “the more the merrier.” Rarely were there just five people in their home. Over the years, the Gaffords hosted eight international exchange students, welcoming them in as part of their family.

While they’d known each other since she was 5 years old – their families were close friends – Leslie and her “John-boy” didn’t start dating until she was 30. Leslie, who had grown up traveling with her family, invited him along to visit her brother in New Mexico. “We started our relationship with that road trip,” she said.

A reluctant traveler at first, John soon succumbed to the lure of visiting new places. Leslie has fond memories of John playing his guitar and harmonica as they sat by a campfire with the kids at state parks in Alabama. Later, they booked cabins at Gatlinburg, Tennessee, took the kids to Disney World and went back to New Mexico a couple of times. The couple spent their 20th anniversary in Playa del Carmen, Mexico.

“He loved it,” she said.

After he was diagnosed with ALS, John was able to take a few short bucket-list trips with Leslie to Las Vegas, including the Hoover Dam and Grand Canyon; both sides of Niagara Falls and a drive to Lake Ontario; his first Major League Baseball game; and an Elton John concert.

“We were obsessed with him not falling on these adventures, and we managed to accomplish it,” said Leslie.

“I tried my best to come up with one last adventure that we could do as a family,” she wrote in the business plan for Windchime Wishes Limited, the nonprofit organization she created shortly after John’s death. “I looked at mountains, beaches, lakes, peaceful wooded areas, tourist traps and off the beaten path, but in each instance I saw aspects of the home or condo that would not be amenable to John’s needs and our abilities.”

She deeply regrets that she couldn’t arrange one last family vacation – something they hadn’t had in five years, since they’d taken their three then-teenagers and four exchange students along on a spring break camping trip. She knew a change of scene would do them all good – to make some happy last memories together outside of that one room he’d been stuck in

At the time, in the summer of 2020, he was still using a walker and couldn’t manage steps.

That’s when Leslie first had a vision of John-boy’s Place, the completely accessible vacation home she would create. “It came to me lightning-bolt style,” she said. “I couldn’t find a vacation home for us, but I was going to make one.”

She would eventually figure out the nuts and bolts of starting a nonprofit to raise the money to fund free weeklong stays for patients and their families. It would be a way to honor John, but also to help other families make memories together. Her battle cry became “Uno Mas!” – Spanish for “one more.”

Leslie Gafford of Mobile stands on the wraparound porch at the lake house in Andalusia she bought in the summer of 2021 to serve as John-boy’s Place. (Michelle Matthews / This is Alabama)

John-boy’s Place

Sitting at the five-barstool island in the kitchen of John-boy’s Place, a lake house in Andalusia, two hours north of her home in Mobile, Leslie still gets goosebumps when she talks about how she found this idyllic spot. She and the smallest of her three dogs, Ollie, have come up to spend the weekend. On this cold January morning, Ollie is lying on top of a blanket on the couch, occasionally running to the front door to bark at something he sees outside.

Later, as the sun starts to set, Leslie sits on the front side of the wraparound porch facing the woods across the road, watching for the deer that come out like clockwork to a feeder every evening. The wind is making the windchimes play their music at once. Leslie has always loved windchimes, so much that she named her nonprofit for them.

Since her a-ha moment about creating John-boy’s Place in June 2020, almost a year before John died, Leslie would occasionally search online for waterfront houses. She knew she didn’t want a beach house. She wanted a place on a peaceful lake, but she hadn’t found the right one yet. One night soon after his death, she grabbed John’s iPad and searched for “waterfront property in Alabama.” The first one that popped up was the house on Point A Lake in Andalusia. She was surprised to learn that it had been on the market for nearly a year.

“I wondered what’s the matter with it,” she said. “And why hadn’t I seen it before?”

Leslie and her best friend, Tina Fleming, went to look at the house, built on piers overlooking the scenic lake, which is the perfect spot for fishing and kayaking. When she got out of the car, “I got goosebumps,” she said. “I said, ‘This is it.’ It was the only house we looked at.”

The spacious home opens into a living area with a fireplace and a kitchen and dining area with French doors leading out to the screened part of the wraparound porch. The master bedroom and bathroom are on one side of the home, and two other bedrooms – one with two queen-size beds and one with two sets of bunk beds – and the second bathroom are on the other. One of the best parts of the house, for Leslie, is the open space underneath it, where families can grill, play ping pong, watch movies and hang out together.

“Someone in a wheelchair will have full access,” she said. “It was agonizing to leave John out of so much stuff.”

No one will be left out at John-boy’s Place. “The idea of this house is inclusivity,” she said. “It’s a safe space for making good memories – simple things everybody deserves a chance at that are taken away with a mobility-challenging disease. I want to give people an opportunity to make good memories.”

Situated on Point A Lake in Andalusia, John-boy’s Place has a wraparound porch and lots of space for entertaining underneath. (Michelle Matthews / This is Alabama)

Living every minute

Christi Gray Price of Madison, Mississippi, tears up easily when she talks about her beloved sister-in-law, Emily Gray, who died at age 56 on Nov. 17, 2021, after living with ALS for 4 1/2 years. Emily started dating Christi’s brother, Richard “Buddy” Gray, when Christi was only 12 years old, so over the years she had become more like a sister than a sister-in-law.

“It’s still really raw,” Christi said of Emily’s death. “She was such a fighter. She had an amazing determination to live every minute until God took her home.”

But, as the Gaffords know all too well, it gets more difficult to travel as the disease progresses. After one last family vacation to a large beach house on Fort Morgan in April 2021, Emily’s world became confined to Facebook, where she learned about John-boy’s Place. From her home in Hernando, Mississippi, she could still scroll and click as she read about Leslie’s plans for an accessible vacation house in memory of her late husband. From the time she was diagnosed, Emily’s family and friends fulfilled as many of her wishes as possible. In four years, she went on 30-plus trips that included visits to New York City, Maine, Colorado, the Grand Canyon, the Florida Keys, the Biltmore Estate and other places on her bucket list. “She loved seeing God in those places,” Christi said. “It was life-giving for her to be there.”

“Emily knew we tried to find another place to take her, but it wasn’t possible with ALS,” said Christi.

After Emily died, Buddy decided to ask for donations to John-boy’s Place in lieu of flowers. Now the family wants to furnish and decorate one of the rooms there in Emily’s memory.

“Emily would be thrilled to know that, in her passing, we are all rallying for John-boy’s Place to come to fruition,” said Christi. “It’s such a great thing for us to have a little voice in.”

Their commitment to John-boy’s Place has given them something positive to focus on after losing Emily. They hope to help another ALS patient in Hernando, a mother of adopted twin daughters, become a beneficiary of a weeklong vacation there.

“This is such a ministry to families with mobility-compromising conditions to have a setup that’s accommodating in every way,” Christi said. “I love Leslie’s vision and heart, coming from her loss.”

A wooden plaque marks the entrance to John-boy’s Place in Andalusia. (Michelle Matthews / This is Alabama)

‘He would have loved this place’

Leslie’s nonprofit, Windchime Wishes Limited, is raising money to make the home completely accessible. The work that needs to be done includes installing a hydraulic lift, widening door frames in the master bedroom and bathroom to accommodate wheelchairs, removing the step-in shower and installing a roll-in one, modifying the bathroom sink for wheelchair access, and putting in a ceiling lift to facilitate safe transfers between the bedroom and bathroom. Eventually, the icing on the cake will be a wide walkway from the house to the water’s edge and a handicapped-accessible pier to make wheelchair access easy and safe.

Team Gleason Foundation, the nonprofit organization started by Steve Gleason, a former New Orleans Saints football player who was diagnosed with ALS in 2011, is planning to help with several home-automation projects, starting with installing smart light switches that can be controlled through a mobile app on a smartphone or tablet. This will enable people with ALS to turn lights on and off, giving them greater independence and relieving the caregiver.

“Team Gleason is proud to be working with John-boy’s Place to empower those with ALS to continue to live full, productive lives,” said Blair Casey, chief impact officer. “This is an important project because individuals with ALS and other disabilities can connect and spend time with their families in an environment that is designed just for them.”

Leslie’s dream is to offer at least one weeklong stay in the home per month for patients requiring extreme accessibility, courtesy of each Hope Sponsor who contributes $2,600 to Windchime Wishes. During that week, patients and up to 12 family members and friends will be able to stay there at no cost and will be provided with four full meals, basic groceries and staples, onsite medical and recreational equipment, including kayaks, a pedal boat and fishing gear. Through Windchime Angels, John-boy’s Place will provide 24 hours of free caregiver time to patients, relieving the familial caregiver during the vacation week.

“I would be happy to have 52 Hope Sponsors and give all the weeks away to families who need it,” Leslie said.

Until then, John-boy’s Place will be available for rent through Windchime Resources, generating income for upkeep of the home and property as well as the purchase of up-to-date, appropriate equipment. Even before the first official guest has spent a night at John-boy’s Place, the process of bringing it to life has given Leslie purpose and helped her see a light at the end of the tunnel of grief. “It’s been my bridge from sorrow back to reality,” she said.

The home design reminds her of a larger version of a modest beach house John’s parents owned in Gulf Shores. “He would have loved this place,” she said. “This is the kind of place that would have made him happy, in his wheelchair or on his own two feet.”

If only she could have found such a place while he was still alive. “I would have given anything,” she wrote in her business plan, “any (reasonable) amount of money, to have a place like this to get away and make some good memories with my kids and my John-boy.”

Now, thanks to her, other families will be able to do just that – for free.

For more information about John-boy’s Place, visit windchimeresources.com, or John-boy’s Place or Windchime Wishes Limited on Facebook.

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