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Contents:
How Golf and Charity Came Together to Save a Life By Dave Kindred Ryan Dant was born with an illness that only doctors and scientists can spell and pronounce, mucopolysaccharidosis. His parents were told he would have signifiant physical disabilities and die before he was 10. Today he is a 16 year old, 5 feet 5, 130 pound high school sophomore. He’s the wrestling team’s student manager. Last summer he umpired Little League baseball games and he’s looking for another job to purchase what every teenage boy in America needs money for – a car. Of all the astonishments in the Ryan Dant story, none is more thrilling than to hear him talk about being just another teenager. He’s 16 and wants to go to college in his parents’ home state at either the University of Kentucky or the University of Louisville. Whether he knew his prognosis or not, it’s amazing that he’s talking about the future. Ryan has mucopolysaccharidosis, known as MPS 1. His body lacks an enzyme that metabolizes sugar. The sugar suffocates the body’s cell structure. The result is havoc. Growth is stunted and distorted. Joints lock up. Organs fail, including the brain. The diagnosis was made when Ryan was three. He suffered headaches so severe that he threw up until he fell asleep from exhaustion. He was abnormally small with a swollen stomach and enlarged head. He ran stiff-legged and couldn’t raise his arms to dress himself. The prognosis – death by age ten – sent Mark and Jeanne into shock and grief. For months, “we didn’t do anything but close the door and cry.” When the Dants opened the door, they opened it determined to help their son in the only way they could – by finding a cure. They had learned that MPS 1 is so rare, affecting 3,000 worldwide, that little money is dedicated to research. So they decided to raise money. How much they needed and how they’d get it, they didn’t know. They held a bake sale and made $342. Scientific research into rare diseases is a high dollar endeavor in which money is measured in millions, not hundreds. If the Dants were to raise serious money for the National MPS Society, bake sales would not suffice. They needed to get lucky. They needed to walk by a No Solicitations sign and find an angel behind it. Yes, divine intervention would be nice and the sooner the better, because a scientist near an MPS 1 breakthrough had come to a critical stage in his research and without additional money his search for a cure would end. And what were the odds that all these threads would come together? A gazillion to one? “There aren’t enough zeroes,” says Barney Adams. It was Adams who put up the No Solicitations sign. He’d moved his club making company of two employees from Abilene to Dallas hoping to find more customers. The sign meant “we’re busy” and “we’re poorer than you.” But Mark Dant, a police officer in Dallas and a neophyte to golf, knew that golf events raised money for charity. He saw Adams Golf, walked past the No Solicitations sign and into the store to tell Barney Adams his story. He left with three clubs to auction off. The first Ryan Dant golf event raised $27,000. Bye-bye bake sales. Hello, The Ryan Foundation for MPS Children. For the next five years, Dant picked up clubs from Adams. Then he heard about Emil Kakkis, a biological chemist and geneticist in California who believed he could develop an enzyme-replacement therapy for MPS 1 patients. He was the scientist about to stop his research. Cue the angel. In that mysterious way that mysterious things happen, Barney Adams now had money. He had developed a golf industry sensation, a low profile fairway wood called “Tight Lies.” He sold them by the boatload. And so Adams asked how much money the doctor needed. “Two hundred thousand,” Dant replied. Adams made a phone call to Tom Fazio, the golf course architect, and Dr. Kakkis had the money necessary to carry on research that next earned him a $5 million deal with BioMarin Pharmaceuticals, a biotechnology company that would bring the Kakkis treatment to market. The treatment is no fun, a four-hour weekly infusion. Nor is it a cure. But it saves lives. The majority of Dr. Kakkis’ research was funded by the Ryan Foundation – over two million dollars raised through a decade of golf events. With golf’s help, Ryan Dant’s headaches are gone. He no longer is short of breath and he receives infusion treatments at home rather than the hospital. He has had nine surgeries but shouldn’t need any more. “My life is a miracle.” (Plan to volunteer, play golf and/or sponsor the Sixth Annual Lekotek Golf Classic, May 2nd.) Honor a Friend or Family Member If you would like to honor a friend or family member for an occasion or birthday, you can make a donation to Lekotek and send the individual a card saying that a donation was made in their honor. Honor and memorial cards are a great way to support Lekotek and recognize friends. This year, Lekotek celebrated its twenty-first anniversary. Initially located in the Easter Seals’ basement, the main location now occupies 3,000 square feet. At the Atlanta location, one hundred and seventy families participate in play sessions, computer club, Happy Tails pet therapy, music, camp, compuplay, computer club and grandparent and mom share groups. Three satellite locations exist in Kennesaw, Duluth and Alpharetta and collectively these sites provide services to one hundred and thirty families. Lekotek appreciates the support of Children’s Healthcare in providing space for the Duluth and Alpharetta sites at their rehab centers. The board is committed to a Lekotek site south of the city and Lekotek is interested in a “partner” who would donate space for this new site. Lekotek gratefully acknowledges the generous support allocated to satellite operations from the following foundations and corporations: The Children’s Trust Fund administered through the Department of Human Resources, Community Foundation for Greater Atlanta, Foundation for NE Georgia, The John H. and Wilhelmina D. Harland Charitable Fund, Fuqua Industries,The Friedman Supporting Fund, West Foundation, The Atlanta Foundation, Nell Warren & William Simpson Elkin Foundation, Greene-Sawtell Foundation, Joe E. Johnston Foundation, Lockheed Martin Employees’ Reaching Out Club and John Weiland Homes’ Second Mile. Individuals from many of these foundations have taken the time to visit, supporting Lekotek for two decades. With their support and that of all our donors, Lekotek continues to make a difference for children and families throughout Georgia. Given up on your old car? Contact Charity Auto Donations at (770) 944-2011 and give it to Lekotek. If you live out of state, you can still donate the car and designate the proceeds to Lekotek. Dear Helene: The holiday season is a time to reflect and say thank you for all the good we have experienced in the past year. You and your agency are at the top of my list. As a pediatrician and physiatrist I have worked with developmentally challenged children and adults for over thirty years. During this period, I learned about your organization and the fine work it does throughout the country. Special needs children and their families have many needs that are not addressed by the medical community. Your agency addresses these while helping families have fun together. In February of this year, my fifteen month old twin grandson was diagnosed with autism spectrum disorder (ASD). Your agency was one of the first to offer help. You were a significant resource in helping find both services and funding. Lekotek also provided family support. There were opportunities for learning through your consultation and lending of developmentally appropriate toys and software. Both boys love the computer and Lekotek Happy Tail (pet therapy) Saturdays. Matt now participates in a full day program and has made great strides but his afternoon at Lekotek is still very special. Anne S. Valko Last month, Lekotek held a silent auction at the Athletic Club NE and raised $4,200. We appreciate the help of volunteers who conducted two hour shifts from morning to evening. Lekotek is creating a volunteer database as we need volunteers for special events, mailings and direct services throughout the year. Please call the office or email if you are interested in having your name added to the database. Top Ten Tips for Selecting Toys for Children with Disabilities This article from the The National Lekotek provides practical advice on choosing toys guaranteed to make a child smile.
Perseverance She
comes when you are most in need Copyrighted and reprinted with permission.
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