A course designer’s fight to cure Batten disease continues. Here’s how you can help

February 28, 2020
Amelia and Makenzie Kahn

Two years ago the golf world was introduced to some of the most terrifying words in the language: juvenile Batten disease. The raised awareness came at an awful cost, as golf course architect David Kahn and his wife Karen went public with the news that their twin daughters had contracted Batten, an exceedingly rare neurological condition that inexorably robs kids of their sight, memory, motor function and ultimately their lives. Amelia and Makenzie were approaching their 8th birthdays when the Kahn family started to tell their story, both of them little beauties with cute personalities. Their eyesight had begun to deteriorate but the coming betrayal by their bodies was still unimaginable. Now, two years later, the girls have been engulfed by Batten.

Amelia, born 10 minutes ahead of her fraternal twin, has always manifested the symptoms faster. In November 2018 her world went dark, the last bit of her eyesight extinguished. Makenzie became her caretaker, leading her big sis around the family home in Scottsdale and initiating all manner of silliness. But in August 2019, Makenzie’s eyesight failed, too. “The really heartbreaking thing,” Karen says, “is that the girls no longer play together. They’ve each retreated into their own little worlds.”

David likens Batten to a cross between Parkinson’s and Alzheimer’s diseases, because both the body and the mind are ravaged. Constant nerve pain has forced the girls to take various meds, including morphine. Their sleep is fitful, at best, which may factor into their intellectual decline. “The dementia has gotten worse, especially for Amelia,” David says. “We’re not sure if she has hallucinations. She definitely lives in a fantasy world, a make-believe world. We have to go along with it or all hell breaks loose.”

Months ago, Amelia requested what she called a magical sewing machine. David found in the garage a decades-old golf video game that had buttons to push and a rolling ball that satisfied Amelia’s need for the tactile. She loves the machine and spends hours on end playing with it. In the early days, she would tell her parents she was making a blanket or pillow and they would sneak one onto her lap, as if the magic was real.

“The requests have become more strange and impossible,” David says. When a live pony failed to materialize, as requested, Amelia spent hours crying in anguish and flailing at unseen torments. The nadir came around Christmastime, when she spent an entire day and night screaming at full volume. David and Karen have seemingly inexhaustible reserves of love and patience, but they are human. They see a grief counselor every few weeks, a chance to cry and purge some of their own hurt. Occasionally, one will give the other a certain look and disappear into a bedroom, putting on headphones to drown out the brutal realities of their everyday life. “We’re very understanding of what the other one needs,” Karen says. “Batten is relentless. Not just for the girls, but for all of us.”

In the face of heartbreaking hardships, the Kahns continue to fight for their girls and the larger community of those affected by a disease that is so rare it has hardly been studied by a medical community. Two years ago they founded the ForeBatten Foundation to raise money for a cure. “It feels like that is our whole purpose now,” Karen says. The golf world has rallied around the Kahns, contributing $1.3 million to kick-start critical research. ForeBatten’s third annual fundraiser will be held the evening of March 2 at Topgolf in Scottsdale. The public is welcome to mingle with Tour players and Arizona royalty like Cardinals wide receiver Larry Fitzgerald, with event tickets starting at $150, every dollar of which goes toward Batten research. (ForeBatten.org has all the details.)

Amelia and Makenzie Kahn celebrate their 9th birthday together.
Amelia and Makenzie Kahn celebrate their 9th birthday together.
David and Karen Kahn

Golf fans everywhere can bid on what has quickly become the best silent auction in golf. Want to have lunch with Jack Nicklaus? Shadow Bill Coore for a day while he works on a new golf course in Saint Lucia? Take a short-game lesson from Parker McLachlin? Tee it up with Joe Theismann at RTJ Golf Club? Take some buddies for a round at Oakmont, Olympic, Riviera, Fishers Island, Friars Head, Sleepy Hollow, Prairie Dunes, Cal Club, Maidstone and dozens of otherwise unattainable citadels? All of these items and many more, which you can bid on here, speak to the generosity of the golf community.

“Even the stuffiest private club will do the right thing for the right people,” says intellectual property attorney Matt Powers, a friend of the Kahn Family who has been an active bidder and donor in the previous ForeBatten auctions. “The number of people who have gotten behind this cause warms your heart. It seems to grow exponentially every year, which says a lot about the golf community and how it comes together for one of its own.”

On Feb. 18, the silent auction went live, and David, a co-founder of Jackson-Kahn Design, was in a reflective mood. “This is my favorite day of the year, watching the bids start to roll in,” he said. He estimated that he didn’t recognize the names of 85 percent of the bidders. “That’s a good thing,” David said. “We don’t want to reach just friends and family. We need to grow the donor base.

“The people who give, they mean everything to us. Without their support and motivation and encouragement, we wouldn’t have the will to go on. A foundation without donors is just a hobby.”

It is important to note that ForeBatten is currently funding six different studies. With so few kids affected by Batten — Amelia and Makenzie are the only ones in the state of Arizona who suffer from it — there is little financial incentive for pharmaceutical companies to invest in years of research for treatment and a cure.

“ForeBatten’s support has been critical in moving things forward,” says Dr. David Pearce, perhaps the world’s leading researcher on Batten. Pearce points to three separate areas of research that the golf community has directly affected through its generosity: treating the symptoms of Battens; stopping the disease’s advancement; and reversing the damage that has already been done. Amelia and Makenzie have periods of lucidity and mobility. Amelia still goes to karate, and while she no longer kicks or punches at her lessons she still toils to improve her balance and coordination. Makenzie has learned Braille and her spelling is at a 4th grade level. Both girls sometimes use canes or walkers but for now can get around on their own.

If the disease progresses, they will lose everything. Wheelchairs and feeding tubes become inevitable and life expectancy is in the late-teens. But it’s not too late for Amelia and Makenzie if researchers can achieve a breakthrough. Citing the best-case scenario, Pearce makes the analogy of soldiers returning home after suffering a traumatic brain injury. “They can learn to speak again, they can learn to walk again,” he says. “The brain can be rewired. Batten is not quite the same thing, but it is like a brain injury, only one that is chronic because you’re born with it. If we can replace or correct the flawed genes, it introduces the possibility of rewiring the brains of these children.”

Of course, every day that goes by tests the Kahns’ faith. It is the most bitter of ironies that their tireless efforts may benefit countless children but not their own. Still, Karen says, “We have to fight this. And we’re going to keep fighting no matter what. We’re never going to stop.”

This spirit has reverberated throughout the golf world. Theismann, a Hall of Fame quarterback and 3-handicap golfer, is a longtime friend of the Kahn family. For this year’s auction he has donated a day of golf, of which he says, “It’s the least I can do. If Dave or [his father] Stan ask for anything, the answer is an automatic yes. I know there are hundreds of other people around the country who say the same thing.” Watching the Kahn family fight so hard for their precious little girls has given Theismann new perspective. “I’ve had this revelation in my life,” he says. “We’re not put on this earth to take. We’re put here to give.”

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