Saturday Barbi Manchester drew from her past in Mount Airy High School sports to encourage the hometown fans to fight on at the second annual Mayberry’s Butterfly Walk for Lupus.
“Before a football game Coach (Eddie) Cobb would tell us to remember who we are, where we came from and what we represent,” Manchester, who once served as the kicker for the Granite Bears, told the crowd. “So grab your helmet and suit up. I may have Lupus but it will not have me without a fight.”
Manchester, an advocate for Lupus awareness and research funding, began her speech by telling the crowd that a clinical trial at Duke had remarkable results for her. She said she had reduced her Lupus cocktails from 14 pills a day to one. She said she didn’t sleep all day, didn’t ache and had her hair — all of which she struggled with in the past. She added that the sun was not so brutal and she could play with her son, Corbin.
“Then it happened, and anybody who has ever been in a trial knows what I am about to say. The trial was cut due to funding,” said Manchester. “Even though I was experiencing great results, there were not enough others in the trial with my same experience to make it worth the money.”
Manchester took her last treatment in May and was told to give her body 90 days to get the drug out of her system before starting another trial. At the 90-day mark, she was informed it would be another 30 days before starting the trial. The Friday before the trial was to start she was informed her test results were so bad they were afraid to start her on a new drug regimen. She had been 120 days with no medications for Lupus except a mild pain pill.
“In just moments the past five years flashed before me as I wondered what I would do,” recalled Manchester. “How can I take care of Corbin? How do I relieve some of the burden of my care that is already on my family and friends?”
Manchester finds herself in yet another from of limbo since her Lupus has returned.
“You are here and you renew my hope,” said Manchester to the crowd. “Next to my love for Corbin and my passion to be a good mommy, this walk is my passion. you have given me a marvelous gift by your attendance and donations. I know when you leave here you will spread the word about this ugly auto immune disease called Lupus. When we bring enough awareness about the effects Lupus has on your life it will elevate this disease to a place of prominence on the nation’s health care agenda.”
Tameka Joyner told the group in no uncertain terms how vicious Lupus has been to her. Joyner was diagnosed with the disease in 1996.
“I have had no hair since I was 17 but I’m fine,” Joyner smiled and told the crowd. “It really hurt me when my son wanted to go out and play and I couldn’t do it. Now he is my biggest fan.”
Joyner told the participants how she had both hips replaced before she was 35 years old. She said one great tragedy of Lupus is that often its victims show no outward signs of the disease while they are destroyed inside.
“I am thankful for the support of friends and family. Barbi’s family is amazing,” said Joyner. “Meeting Barbi was a blessing. I have never laughed so much. It (Lupus) may have slowed me down but now I am back.” She noted that she is helping as an advocate for others with Lupus and is a full-time student.
CEO and President of the Lupus Foundation of America, Piedmont Chapter, Christine John-Fuller spoke to the group about the horrors of Lupus.
“There are individuals that rise above everything,” began John-Fuller. “Individuals like Barbi who have been hit with one of the worst things life can throw at you. I consider them bigger than what’s faced by comic book heroes. Lupus is unrelenting. It is the villain. Any organ can be affected at any time. It is relentless, ravaging. To face that every day with a smile on your face is heroic.”
Former teammates and Coaches Eddie Cobb and David Diamont surprised Manchester at the ceremony. They also released 10 butterflies in honor of Manchester’s jersey number 10.
“I insisted that she (Barbi) must go by herself to kick but would participate in everything else. And she did,” said Coach Cobb. “She’s not just a special lady and a special person she’s a special Mount Airy Bear. We had a secret weapon. We had someone who made seven consecutive extra points that won the game for us on one night.”
Diamont told the crowd about the first time Manchester boarded the bus for a game. The rest of the team was already on the bus.
“Here we were all on the bus and here comes Barbi,” recalled Diamont.”There she walked. Looking good and smelling even better. Every head turned on the bus as she walked back and took her seat. I asked her after that to not look so good or smell as good.”
Diamont said she had to dress in a broom closet for her first game. He said she was what made the special teams step up their game because “nobody was going to block our kicker.”
“We want to thank you for your contributions as an athlete and an individual. We wish we could do more to help you,” concluded Diamont.
Mount Airy Commissioner Shirley Brinkley told the group about Manchester being a highly ranked high school kicker and about her participation in soccer, softball, track and swim team.
“Each one of you (the participants) represents what Mount Airy represents. We are a town of people who sacrifice for the benefit of others when we see a need. We don’t ask why should we help, we ask when can we help,” said Brinkley.
Mistress of Ceremonies Mondee Tilley told the group of her encounter with Manchester.
“At this time last year, I was laid up in the hospital,” said Tilley. “She (Barbi) was there with the most beautiful purple flowers and her kind smile. The reason I am here today is because Barbi has been such an inspiration to me. We have to band together to support everyone who is fighting the battle with Lupus.”
Johnny White and Donna Griffin Smith were asked to light a candle in memory of Phyllis Smith and Maxine White. Smith lost her battle with Lupus in 2006 at the age of 48. White was killed by the disease in 1984 at the age of 46.
Early estimates indicated that the walk has raised $10,000 to aid in the efforts against Lupus.
Reach David Broyles at firstname.lastname@example.org or 719-1952.