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Amelia, left, and Makenzie Kahn are battling juvenile Batten disease.

UPDATE: The 4th Annual Take a Swing Fore Batten Online Auction will be accepting bids from March 15-29, 2021. Click here to browse the incredible collection of items, including tee times in Oakmont, Merion and Baltusrol; a four-night stay at the Four Seasons Wailea, Maui; or a day with course designer Bill Coore.

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Two years ago the golf world discovered some of the language’s most terrifying words: juvenile Latte disease. The awareness came at a huge cost, as golf course architect David Kahn and his wife Karen publicly announced that their twin daughters had contracted Batten, an extremely rare neurological condition that inexorably robs children of their sight, their memory, their motor function and ultimately their life. Amelia and Makenzie were approaching their 8th birthday when the Kahn family started telling their story, both little beauties with cute personalities. Their eyesight had started to deteriorate but the betrayal to come by their bodies was still unimaginable. Now, two years later, the girls have been swallowed up by Batten.

Amelia, born 10 minutes before her fraternal twin, always showed symptoms more quickly. In November 2018, her world darkened, the last part of her sight died out. Makenzie became her babysitter, leading her older sister into the family home in Scottsdale and initiating all kinds of nonsense. But in August 2019, Makenzie’s sight also failed. “What’s really heartbreaking,” says Karen, “is that the girls don’t play together anymore. They’ve each retreated into their own little worlds.

David likens Batten to a cross between Parkinson’s and Alzheimer’s disease, because the body and mind are ravaged. Constant nerve pain forced the girls to take various medications, including morphine. Their sleep is restless at best, which can contribute to their intellectual decline. “The dementia got worse, especially for Amelia,” says David. “We don’t know if she’s hallucinating. She definitely lives in a fantasy world, a fantasy world. We have to deal with where all hell breaks loose.

Fighting for a miracle: Course designer David Kahn and his wife Karen seek strength in the most formidable battle imaginable

Months ago, Amelia asked for what she called a magic sewing machine. David found a decades-old golf video game in the garage that had push buttons and a rolling ball that satisfied Amelia’s need for touch. She loves the machine and spends hours playing with it. At first she would tell her parents that she was making a blanket or a pillow and they would put one on her lap, as if the magic was real.

“The requests have gotten stranger and more impossible,” says David. When a live pony did not materialize, as requested, Amelia spent hours crying in anguish and struggling against unseen torment. Nadir arrived at Christmas, when she spent an entire day and night screaming at the top of her voice. David and Karen have seemingly endless reserves of love and patience, but they are human. They see a grief counselor every few weeks, a chance to cry and to serve some of their own injury. Every now and then, one will give the other a certain glance and disappear into a bedroom, putting on headphones to drown out the brutal realities of their daily lives. “We understand very well what the other needs,” says Karen. “Batten is relentless. Not just for the girls, but for all of us.

In the face of heart-wrenching ordeals, the Kahns continue to fight for their daughters and the wider community of those affected by a disease so rare it has barely been studied by a medical community. Two years ago, they founded the ForeBatten Foundation to raise money for a cure. “It feels like that’s our whole goal now,” says Karen. The golf world has rallied around the Kahns, contributing $ 1.3 million to initiate critical research. ForeBatten’s third annual fundraiser will take place on the evening of March 2 at Topgolf in Scottsdale. The public is invited to mingle with Tour players and Arizona royalty, like Cardinals wide receiver Larry Fitzgerald, with event tickets starting at $ 150, with every dollar going in search of Batten. . (ForeBatten.org has all the details.)

Makenzie, left, and Amelia Kahn for their 9th birthday.

Golf enthusiasts around the world can bid on what has quickly become the best silent auction in golf. Fancy having lunch with Jack Nicklaus? Shadow Bill Coore for a day while working on a new golf course in Saint Lucia? Taking a short game lesson from Parker McLachlin? Play with Joe Theismann at RTJ Golf Club? Take a few friends for a ride to Oakmont, Olympic, Riviera, Fishers Island, Friars Head, Sleepy Hollow, Prairie Dunes, Cal Club, Maidstone and dozens of otherwise inaccessible citadels? All of these items and more, which you can bid on here, are a testament to the generosity of the golf community.

“Even the most stuffy 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 previous ForeBatten auctions. “The number of people who have joined this cause is heartwarming. He seems to be growing exponentially every year which says a lot about the golf community and how they come together for one of their own. “

On February 18, the silent auction went live and David, co-founder of Jackson-Kahn Design, was in a thoughtful mood. “This is my favorite day of the year, watching the deals start to arrive,” he said. He estimated that he did not recognize the names of 85 percent of the bidders. “It’s a good thing,” said David. “We don’t want to just reach friends and family. We need to increase the donor base.

“The people who give, they mean everything to us. Without their support, motivation and encouragement, we would not have the will to continue. A foundation without donors is just a hobby.

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

“ForeBatten’s support has been essential in getting things done,” says Dr David Pearce, perhaps the world’s leading Batten researcher. Pearce points to three distinct areas of research that the golf community has directly touched by its generosity: treating the symptoms of Battens; stop the progression of the disease; and repair the damage already done. Amelia and Makenzie have periods of lucidity and mobility. Amelia still goes to karate, and although she no longer kicks or punches her classes, she still struggles to improve her balance and coordination. Makenzie has learned braille and her spelling is at the grade 4 level. The two girls sometimes use canes or walkers, but for now they can move around on their own.

The Kahn family (Amelia, left; Makenzie, right) with Pongo, who is trained as a service dog to help the girls.

As course designer David Kahn’s twin daughters continue to battle Batten disease, he and his wife fight back

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Alan shipnuck



If the disease progresses, they will lose everything. Wheelchairs and feeding tubes are becoming 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 of times, Pearce draws the analogy of soldiers returning home after suffering a head injury. “They can relearn to speak, they can relearn to walk,” he says. “The brain can be rewired. Batten isn’t quite the same thing, but it’s like a brain injury, just one that’s chronic because you were born with it. If we can replace or correct the defective genes, it introduces the possibility of rewiring the brains of these children. “

Of course, each passing day puts the Kahn’s faith to the test. It is the most bitter of ironies that their tireless efforts can benefit countless children but not theirs. Yet Karen says, “We have to fight this. And we will continue to fight no matter what. We’re never going to stop.

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

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Alan shipnuck

Golf.com

GOLF Senior Writer Alan Shipnuck writes feature articles and a monthly column for GOLF Magazine and has its own vertical on GOLF.com titled “The Knockdown,” which is home to podcasts, video thumbnails, event coverage and its popular weekly #AskAlan Mailbag. He is the author of five golf books, including national bestsellers. Bud, Sweatshirts & T-shirts and the swinger (with Michael Bamberger). Shipnuck is very active on Twitter, with 50,000 followers.

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