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In support of his brother, Parkton native Kevin Payne to bike across the country

YMCA

On April 1, with only a few changes of clothes, a tent, a hammock, a cellphone and a bicycle, Payne will embark on the greatest journey of his young life: a 9,000-mile bike ride across the country and back — alone.

While plenty of people pedal coast to coast each year, not many set out with a mission as noble as the Parkton native's. In honor of his older brother, Jacob, who was diagnosed with Williams syndrome in 1995, Payne will trek the country raising awareness for the genetic condition also known as WS.

"I wouldn't be the person I am without Jake in my life," Payne, 18, said. "I look up to him."

Jacob Payne, 21, is one of an estimated 25,000 people in the United States living with the disorder, according to the Williams Syndrome Association. The genetic condition is a neurodevelopmental disorder characterized by mild to moderate learning disabilities, elflike facial features and cardiovascular defects. The telltale signs of WS generally appear in infancy.

Jacob was 2 when his mother, Debbie Payne, noticed her son's stunted development.

"He wasn't hitting his milestones," said Debbie, who was working as a day-care professional at the time. "But he wasn't far enough behind that it raised any red flags."

But as Jacob's developmental problems persisted, Debbie and her husband, Bob, were urged to see a geneticist. One week before his third birthday, Jacob was diagnosed with WS.

Bob said he and his wife cried upon receiving the news.

"It was horrible," Bob said. "We just didn't have a clue."

The support they needed

Although the Paynes were initially bewildered, support from other WS-affected families and WSA health care professionals helped them grapple with the diagnosis.

"There were a couple of moms I would call and just ask the most random questions," said Debbie, who since becoming a WSA member in 1996 has served the organization as a board member, treasurer and president. "They were so kind and helped to smooth over anxiety or frustration I may have had at the time. They got it. They understood [because] they walked in the shoes I was wearing. I could never thank them and the WSA enough."

In spite of his limitations, Jacob had a normal childhood. He played soccer and baseball like his brothers, and took part in Boy Scouts and community theater. Today, Jacob leads a happy, healthy and social life. He enjoys motorcycles, country music, helping out around the family farm and working at Wegmans in Hunt Valley.

Through support, research and education, the WSA has supported families such as the Paynes since 1982. The nonprofit organization has helped more than 5,000 families affected by WS, a number Kevin Payne hopes to increase during his cross-country bike ride.

Preparing for the trip

Payne's 9,000-mile expedition, which will span 29 states and take about six months to complete, will begin in Baltimore, trail down the Eastern Seaboard and into Florida, cross the lower Midwest and touch the Pacific Coast. Once he reaches California, he will loop back across the Midwest before biking up through West Virginia and into Maryland.

Since he began planning his ride in mid-October, the former Hereford multisport athlete has been training close to five days a week. If he isn't biking 5 to 10 miles a day around the Hereford community, he's running around his family's farm or swimming laps at the YMCA in Shrewsbury, Pa.

"The goal is 80 to 100 miles a day," Payne said. "I'll be totally self-sufficient. I'll budget about $20 a day for food, and I'll have a lot of dried food with me. I've got a hammock, so when I get tired, I'll just find a park and camp out."

When Payne isn't pedaling or camping, he'll be lodging with other WSA members. Fifteen families are scheduled to house Payne during his trip. Along the way, he will share his family's story and collect donations for WS research and other WS-affected families.

To navigate his plotted route, Payne will use a map application on his iPhone 5, which will be charged by a small, 4.5-watt solar panel. If things go as smoothly as he expects, he expects to arrive in Anaheim, Calif., just in time to speak at the WSA National Convention on July 4 — and to reunite with his family for the first time in three months.

"I'm not really nervous," Payne said of his trip. "I'm excited. I'm looking forward to everything — seeing new things, new people. Every day is going to be something new."

Payne's parents, on the other hand, aren't as eager for him to hit the road.

"I'm quite concerned," Bob Payne said. "I told him, 'Last year, your mother wouldn't let you ride your bike home from Hereford High School because it was on York Road, and this year you'll be riding across the country.'"

Said Debbie Payne: "Am I nervous about the ride? Sure, any mother, any parent would be. I am mostly nervous about the desert areas — no trees, no shade, nothing for days on end, except scorpions and rattlers."

Despite their worries, the Paynes are proud of their son and his mission.

''If it wasn't for Jake, he wouldn't be doing it," Debbie Payne said. "He'll be spreading Williams syndrome awareness, but Jake will be the inspiration to keep him going.

"The ride will be his way of connecting. Because it's so difficult for those with Williams syndrome to form long relationships [because of an inherently limited attention span], they tend to get lonely very easily. When Kevin's out there on his own, he's going to be lonely and he's going to struggle, so there's going to be a lot of parallels."

Jacob Payne shares his parents' pride.

"I'm glad he's doing it," Jacob said with a big smile. "It's awesome."

twitter.com/derekwattay

For more information or to donate, go to williams-syndrome.org/Kevin-Payne.

Copyright © 2014, The Baltimore Sun
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