When it comes to participation, golf can be a very polarizing game. For some, the challenge of the contest and the ability to experience the outdoors over a few hours can be intoxicating. For others, it is sheer, unadulterated madness, little more than trying to knock a ball the size of an aspirin into a speck of a hole using a crooked stick.
Philip Robertson falls into the former category and then some. For him, a round of golf provides a respite from his job as a computer programmer — fresh air, sunshine, exercise — and a brief break from the day-to-day responsibilities of husband and father of two.
In April, however, the game will take on special meaning for the Fort Smith native when Philip, along with four other players, will report to Eagle Crest Golf Course in Alma for a day of golfing. Or, more accurately, a day and night of golfing, as in twenty-four straight hours on the course.
Even for a golf nut like Philip, this is something else.
“The first one in 2021 was a one-hundred-hole challenge. Started it a little before five in the morning with glow-in-the-dark golf balls and ended up walking one hundred and twenty holes that day,” he says. “This one, I was coming off of Achilles surgery back in February of 2023 and once I was finally able to get back at it as far as training, I started thinking about what I could do this time that’s a little different.”
Different doesn’t begin to describe the attempt or the cause behind it. Dubbed Endure4Eden, the event is designed to raise both money and awareness for Phelan-McDermid Syndrome, a condition so rare many people haven’t even heard of it. It is, however, the daily reality of the Robertson household where Eden, Philip and Emily Robertson’s nine-year-old daughter, is one of fewer than four thousand diagnosed cases in the world.
“Phelan-McDermid Syndrome is a change or deletion of part of the twenty-second chromosome,” Philip explains. “It can affect everything from learning and communicating all the way down to eating and sleeping. I believe seventy-five to eighty percent of the people diagnosed with this syndrome also are diagnosed with autism, and epilepsy is also a common diagnosis with this syndrome.”
In Eden’s case, she’s experienced global developmental delays such as being mostly nonverbal until the age of five. Her father says while she does have a diagnosis of autism, she appears to have been spared epilepsy and in recent years she’s made strides communicating with the outside world.
“With her therapies and especially from my wife being a speech therapist, she’s been able to start communicating verbally a little bit more,” Philip says. “She’s not intelligible to everyone around her, but to those that are around her quite a bit, Emily and me and to her grandparents and her teachers, we understand for the most part what she’s saying. She’s also started to be able to do a little bit of handwriting.”
Life for Eden started out like that of any other newborn, but between year one and year two, her mother, a speech therapist who works at Stepping Stone School in Alma, began to notice some developmental delays such as vision problems and missing gross and fine motor skill milestones. By the time Eden was two, her parents began seeking formal diagnosis to determine the root cause of her issues. Because of the extreme rarity of her condition, accurate diagnosis wasn’t easy to come by.
“She initially had an MRI of her brain, and they noticed thinning of the corpus callosum which is the fibers that connect the two hemispheres of the brain. This was kind of our first diagnosis and first clue that something was developmentally not quite right,” Philip says. “She was later diagnosed with cerebral palsy, then they thought she was on the autism spectrum.”
The family eventually landed at the Dennis Developmental Center in Little Rock where it was suggested Eden undergo genetic testing because her diagnosis to that point didn’t adequately explain all her symptoms. The testing yielded an accurate diagnosis that, while an important first step, didn’t do much to make the couple feel in kinship with others, given the rarity of the condition. For that, Philip and Emily turned to the Phelan-McDermid Syndrome Foundation.
“There’s so few people that have this that it was tough to get connected, but the foundation has set up really wonderful staff and outreach programs that are regionally based as far as the families getting together,” Philip says. “We joined up with the foundation community to help figure out how to best proceed and give Eden the best quality of life we could. We were able to connect with a couple of other families from Arkansas, some from Oklahoma and some from Missouri, who were able to give us advice and offer support, knowing we all were going through the same things.”
In return, Philip wanted to do something to support the foundation’s work and that’s how the first Endure4Eden event, in which he raised $12,000 golfing solo three years ago, came about. In pondering his latest effort, Emily encouraged him to think bigger.
“It was my wife who said, ‘Hey, why don’t you make it multiple people and maybe do four or five people instead of just you? That would make it more community involved, you could get other families from the Foundation, and it could really help with increasing the awareness and how broad of a reach this has.’” Philip says “The thought was to see if we could get five people and all of us average two hundred holes over this twenty-four-hour period, we can get to one thousand holes.”
Philip put out feelers for additional golfers to round out the team. In addition to Philip, the 2024 Endure4Eden challenge team will include Zach Brunet of Michigan, whose sister has the condition; Alex Graziani and Derek Frail of Bentonville and Lex Mickle of Fort Smith, who are friends of the Robertsons. In signing up, each golfer is looking at walking between sixty and seventy miles during the event, accumulating seven to nine thousand feet of elevation gained.
Philip thanked the management of Eagle Crest Golf Course for their support of the challenges, which have recently taken on even more significance. Should the team reach their target number of holes in the time window provided, it would achieve Guinness World Record status for the most golf holes played in twenty-four hours, walking. And while all that hoopla is a nice bonus, it pales in comparison to the kind of awareness Philip hopes to raise as well as funding through donations and sponsorships for testing and treatment through the Foundation.
“Let’s say everything is status quo from this point on. We don’t anticipate Eden ever being able to live by herself. We anticipate her living with us or at some point needing a caregiver,” he says. “That said, with clinical trials, with the advancing research, we always have hope that at some point she would be able to do that. The Phelan-McDermid Syndrome Foundation, and especially their scientific branch, is constantly working on clinical trials and development to help individuals both symptomatically and, hopefully, eventually to find a cure.”
Eden herself, a rambunctious, sweet child who loves the water, helps give her parents an image of what her life could be like in conjunction with a better understanding of the conditions by the medical and scientific communities.
“One of her biggest strengths is her drive for independence and her problem-solving, as she’s shown us before,” Philip says. “We weren’t sure if she’d ever talk and now, she’s able to communicate. We didn’t ever think she’d be able to write, and she can now make lists on her easel. She’s shown that she has the drive and desire to really improve, to get more independent and do things for herself. That gives us hope.
“That’s one of the reasons that we’re so heavy on advocating for her because we know that with her continued growth and with the continued development of new therapies, new drugs, new clinical trials and research, we have hope that at some point, she can get there.”
Endure4Eden
April 12-13, 2024
Eagle Crest Golf Course, Alma
To keep up on Endure4Eden or to contribute, follow on social media: Facebook/YouTube: Endure4Eden
Instagram: Endure4EdenGolf
