- The Enterprise
- The Recorder
By NICOLE CLARK
John Vernon Nagle was convinced Bud didn’t like him. The cockatoo would climb from its cage, ivory wings outstretched and flapping wildly and, would soon glide through the house, seeming to perch on everything, and anyone, but John.
“I told him maybe it was the air,” said Janet Nagle, John’s mom. Muscular dystrophy had been wasting away John’s strength since he was a toddler. The Nagles adopted John as an infant, and, over the years, friends became harder to come by. As his muscles weakened, John needed support holding up his head. He needed help bathing. He needed help swallowing. He needed help breathing. And, he got lonely.
The family hoped Bud would help lift their son’s spirits. But the air John was sucking in through a ventilator made a noise that might have been scaring the bird away, Janet said.
“I told him, ‘if you could just hold on a little while longer,’” she said. Take fewer breaths, and maybe Bud would land on him, too. It worked. And “it was like Christmas,” Janet said.
John could hardly contain himself, saying over and over, “Mom, he’s likes me!” After that, Bud would often find a spot on John’s wheelchair and ride around with him.
John died in 2007 at 26. And, the Nagles find memories of him in many places. Bud is one of them; he still lives with the family in Mechanicsville. Another is the annual Muscular Dystrophy Association of Maryland Yard Fair. It started when John was 5. “And, he asked me to keep it going as long as I could,” Janet said.
This year, it’s scheduled for Monday, Sept. 2, at the Farmers Market and Auction in Charlotte Hall, from 9 a.m. to 5 p.m. The Sam Grow Band is in the lineup from 10 to 11 a.m. A car and motorcycle show will coincide with the yard fair and will be held from 8 a.m. to 1 p.m., next to the farmers market. All proceeds, from the yard fair and car show will support the Muscular Dystrophy Association. Donations are accepted and volunteers are welcome.
The yard fair has raised more than $200,000 through the years, Janet said, and the event usually attracts close to 1,000 customers. “There are so many others like John who we’d like to find a cure for,” she said.
Darlene Miller had one grandson, Connor, who succumbed to muscular dystrophy at age 2. In her Lexington Park home, she’s caring for another grandson with the disease.
Kyle is 11, headed to the fifth grade, and “will tell you that he’s a normal little boy except he can’t walk,” Miller said. But, he also needs assistance breathing and eating. “He has to be picked up and put in bed. We have to wash and feed him,” she said. “They didn’t think he would live the first month.”
Instead, he’s been stubborn and he’s determined, Miller said. If anyone tells him he can’t do something, he works at it until he can. “We let him try,” Miller said. It was that way with his tricycle; he tried and tried and finally rode it up until last summer when he got too big for it (Miller hasn’t been able to get him another one).
Kyle’s dad likes to go crabbing, “now he wants to go crabbing,” Miller said. They’ll put balls on tees and Kyle will knock them down and ride around the bases in his powered wheelchair. He’s wanted to be a mechanic, even a race car driver.
When asked Friday what he wanted to do next, Kyle said by phone, “ride a four-wheeler.” Miller said he’s tried. Make no mistake about it, Kyle said, “I’m a big boy.” And, as an aside, he wants folks to know hockey is his favorite sport, and, his team, the Washington Capitals.
“He’s my miracle baby,” Miller said. And, she said, with the yard fair money can go toward research and finding a cure. “The form that Kyle has, they seem to be doing a lot of research on it now.” He has centronuclear myopathy, Miller said.
Miller said a new drug may be ready for clinical trials within the next year. “I’m hoping that Kyle will be one picked for the trial,” she said.
John Vernon Nagle had the Duchenne form of muscular dystrophy. John Nagle, the father, said his son “was a movie buff. He spent a lot of time on the Internet looking for directors and actors that were good.” They Nagles still have “probably 500 DVDs” in John Vernon’s old room, where Bud’s cage still is.
Now about 14 years old, Bud squawked in the background, saying “Hello!” repeatedly during a recent interview. And, John Nagle said, “when I come home at night, he yells, ‘Dad!’”
“We’ve enjoyed the heck out of him,” he said.
Crying into the phone, John Nagle recalled that, not long before his death, John Vernon asked, “Dad, do you love me?”
“I started crying ... I said I love you so very, very much,” he said. “And, I hugged him so hard. I said, ‘You don’t know how much of a friend you are to me.’”
John later asked his mother the same question. She said Friday, “we would do it all over again, if we had the chance.”