Andrew Dys

Rock Hill woman’s dying wish: Help one kid with her rare bone disease to dance

Rose Thrift at the beach. Thrift, 49, died June 8 from a rare bone disease.
Rose Thrift at the beach. Thrift, 49, died June 8 from a rare bone disease. Contributed photo

Her obituary is unlike almost any other, as it does not just explain a life lived, but what death might bring.

Rose Ellen Thrift, 49, a longtime Rock Hill city hall worker until she could work no more, battled a rare bone disease with an awful sounding name – fibrodysplasia ossificans progressiva. She fought her entire life, a smile on her face and joy in her heart right up until the end came on June 8.

In people with Rose’s disease, the connective tissues – cartilage, ligaments, tendons – harden up until the body creaks like the Tin Man from “The Wizard of Oz,” but nobody has an oil can. It is sometimes called “stone man disease,” and it is so rare there may be fewer than a thousand people in the world with it.

Rose’s ankle had hardened so much that it just snapped in a recent fall. Near the end, she could hardly turn her head.

Her family used a hydraulic lift to move her between a wheelchair and the hospital bed she slept on at home – inside a room filled with Jeff Gordon, Carolina Panthers and Boston Red Sox mementos, along with the Bible verses that brought her a great strength that might be unmatched anywhere by anybody.

Finally, Rose could not fight anymore.

Her last request – after a life throughout which she was given nothing but gave everything – was not to be buried.

Rose asked her momma to donate her body to science, so that someday, some kid somewhere might be able to get up out of a wheelchair and dance.

“Rose said right to the end that if her life, her body, could help somebody else, then she would be happy,” said her mother, Ellen Quinn. “That girl of mine cared more about other people than herself all her life.

“She still does, even though she is gone.”

But Rose Thrift’s life was not just about being the lady in the wheelchair at sports events or Kenny Chesney concerts or helping people at city hall for more than a dozen years. Rose – brittle body and all – softened the hearts of everybody she met.

Robin Buchanan was delivering mail many years ago when she came across Rose – out in the cold.

“Rose was in her chair, stuck in the snow,” Buchanan said. “So tough and independent, she went out in a storm to get the mail. We became family right then and there. I did that one little thing for her, get her unstuck in the snow, and she spent the rest of her life making my life better. She did the most with the least. She was not just a friend. She is my blood, and I will always love her. She was all about love.

“All the four-letter words out there in the world, ‘Rose’ is one and ‘love’ is one.”

When Buchanan was married, Rose danced from her chair by moving her arms. The whole wedding party cheered.

Sallie Ann Silcox, a friend and caregiver, weeps when speaking of Rose, whom she calls a sister despite the fact that Silcox is black and Rose was white. Silcox waves a hand to dismiss the nonsense that race has divided people for far too long.

“We are sisters anyway, forever,” Silcox said. “This is a woman who never complained, never griped, just gave people love and compassion.”

Rose spent her whole life as an advocate for people with disabilities. She traveled and did not stop living because she could barley walk, and eventually could not walk. She was the first person with a disability to roll in a wheelchair on a Catawba River handicapped-accessible trail decades ago.

Back in 2001, Rose was at a Walmart when somebody pulled up next to her special needs van and parked smack in the handicapped spot that is supposed to be for people who are really disabled. As if that weren’t bad enough, the driver gave Rose the finger.

Rose was really mad. She wrote a letter to the editor in The Herald that told that guy and the world that she was watching for sneaks and villains who would park illegally in a handicapped spot.

She was beloved by her coworkers at city hall, inspiring them to do their best for all people.

More than a decade ago, Crystal King lived near Rose’s family. Rose would wheel herself over to Crystal’s window and spend hours with her while she was pregnant and on bed rest. The two were close to inseparable ever since.

“She was more than a friend, she is a part of me and my own children and family,” King said. “She made our lives better. She brought so much love to all of us. She showed us what it is like to love and give.”

In Rose’s obituary, there were so many to name as survivors or those who passed before her. Someday, the list might include strangers cured from a disease where bones grow where connective tissue is supposed to be.

The list of people so enamored with Rose’s positive ways, her magic, as her joints turned to stone, is long. She asked that they be mentioned.

Absolutely.

Brothers Jimmy, John and Bobby Joe Thrift. Father Bobby Thrift. Stepmother Libby Thrift.

Grandparents G.W. and Rosie Lee Thomas Hamrick, and grandparents Hillard and Genelle Ross Thrift. Special nephew Bobby Dwayne Thrift.

Special people Kagelyn Love Varnadore, Shelby Ryan Price, Lily Ann Price, Jerry Preston King.

That last one – Jerry Preston King – is a 10-year-old football player, the son of Rose’s friend Crystal King. He likes Preston better than Jerry, so that’s what people call him.

Preston sat on his momma’s lap, as tough as can be in his South Carolina Gamecocks jersey, and cried when he talked about his “Aunt Rose” – not by blood, but far closer.

Rose, who could barely turn her head, but would go watch him play football.

“She was so great,” Preston said. “She loved me, and she told me she loved me, and she told me I could be anything I wanted if I tried my best.”

The family is hoping that a church or someone will offer a hall or a big room where a service can be held soon.

But not a funeral service.

“We want to celebrate Rose,” her mother said.

Most people with the bone disease that Rose Thrift had do not live to age 40. Rose fought and laughed and cheered for her Panthers and Jeff Gordon and her Red Sox until she was 49.

She asked that her bones be studied, so that someone, somewhere, someday, will go watch the Panthers and not sit in a wheelchair like she did – but stand and cheer.

Andrew Dys •  803-329-4065 •  adys@heraldonline.com

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