Third annual Mayberry’s Butterfly Walk for Lupus Mistress of Ceremonies Kate Appler opened the event with comments about the destructive nature of the autoimmune disease lupus. She said she had first become aware of lupus 20 years ago when an elderly church member was diagnosed with it.
“If you don’t know Barbi (Manchester), you’re missing a lot. I watched her deal with a disease which many of you know is not kind,” said Appler of the walk’s primary organizer and a lupus thriver. “Not only was she brave. She fought back. Barbi put an entirely different look to the disease to me. This morning I look out at a child of 3 who has lupus at the very beginning of her life. Unlike other diseases, you can’t say I’m a survivor. Lupus doesn’t go away. It will go into remission, but it will come back at some point. It will show up and knock you back.”
She was referring to 3-year-old Brelan Belcher of Pilot Mountain who was diagnosed several weeks ago with lupus. Belcher has battled neuroblastoma, a type of kidney cancer for two-and-a half years and already has had a kidney removed. Belcher later helped release local butterflies, caught by Barbi and her son, Corbin Manchester, with a fishing net in their back yard, and walked hand in hand with Manchester on the first lap of the walk.
Appler said the participants in the fundraiser left her humbled because their efforts would change history. She said they are changing the lives of people who have not even been diagnosed with lupus.
Mount Airy Mayor Deborah Cochran was a speaker for the event. She said it was an example of the collective heart of the city and others who traveled to the walk from as far away as Michigan. She read a proclamation recognizing the event which stated that lupus does not only strike women of child bearing age but also strikes men and children, leaving none safe. The proclamation recognized the difficulties in diagnosing lupus and that the event begun by Manchester in 2011 has raised more than $26,000 to fund lupus research and awareness.
CEO and President of Lupus Foundation of America, Piedmont chapter Christine John-Fuller told the crowd Manchester and her family and lupus victims had become a family for her.
“This is a disease where so much of you feel alone,” said John-Fuller. “Where there are connections with a group of people affected by this you become a family. This Kick Up slogan on our shirts is what I want to do (to lupus). Because you’re messing with my family now. What you are doing here is getting the best money to the best scientists and doctors to help families. You are thrivers not survivors.”
Manchester spoke next and told the crowd it seemed “just a few weeks ago” she was hosting the second annual walk.
“Last year I shared with you my clinical trial was terminated due to funding and that I would be starting a new trial in October,” said Manchester, who recounted how tests in October indicated she was too sick to start a trial. After a four-week wait, she returned in November to be told she was not “sick enough” for a trial, the lupus was not active enough.
“In the six years since my diagnosis, I have never felt more defeated. By December I had pretty much given up,” said Manchester. “But then I looked at my precious Corbin and little by little I regained my passion and my desire to fight back.”
In January, she qualified for a new trial program. She said she is feeling better with flares of the disease less frequently. Manchester’s 99-year-old grandmother, Lolean Adams, also was on hand to cheer her on.
She has since served as the state delegate for the lupus summit in Washington, D.C., on the sixth anniversary of her diagnosis, June 25. The Senate Appropriations committee approved a $307 million increase for National Institute of Health funding with another $2 million to continue the lupus education for health care providers and $.43 million allocated to the National Lupus Patient Registry at the Center for Disease Control.
Becca Hart, Miss High Point Teen USA, who was diagnosed with lupus at age 15, also spoke to the group. She told the group her little sister also has been diagnosed with lupus and suffers worse than her. Becca Hart told the group about her personal struggle with lupus.
“There were times I would wake up and couldn’t get out of bed. My parents had to do everything for me,” said Hart. “This was so hard. It was scary, but I decided to look forward and educate others about this.”
Hart’s many health problems include hearing loss so bad she had to read lips to communicate, heart problems and severe Obsessive Compulsive Disorder.
An unexpected champion for her has been her service greyhound, Mike, who can detect problems with her irregular heart beat even though he was not trained to do this. Hart founded the Harts 2 Paws nonprofit organization to train service animals for lupus sufferers and will use Mike in the upcoming Miss Teen USA pageant. This will be the first time a service dog has been in the national pageant.
Lupus thriver Susan Herndon Corbett of Burlington, who started the Susan’s Wings 4 Hope group, also spoke to the crowd.
Lupus thriver Tehesia Wilcox, brother of Boston Celtics player Chris Wilcox, lit the memorial candle in memory of her aunts, Remonia Brown and Brenda Brown. Remonia Brown lost her battle with lupus in 1971 at the age of 20. Brenda Brown lost her battle in 1998 at the age of 45.
Reach David Broyles at firstname.lastname@example.org or 719-1952.