Grandfather's death prompts Troutville 12-year-old to help raise money to find a cure for Lou Gehrig's Disease
Mary Bishop


Kelsey Conley with a picture of her and her grandfather John Calvin Conley Sr.

Kelsey Conley still keeps a close eye on the Boston Red Sox, just like she and her granddad always did.

John Calvin Conley Sr. had been an athlete and Sox fan all his life, and when Kelsey starting pitching fastpitch softball in Botetourt County, he was there in the stands, cheering her on.

But about a year ago, the robust man who had traveled the world for shipbuilding and manufacturing companies was struggling just to get to her ball games.

He was dying of ALS, or amyotrophic lateral sclerosis, a fatal neuromuscular illness also known as Lou Gehrig's disease.

Kelsey, 11 then, had watched the slow loss of his motor skills with careful attention, and when it came time for her 4-H club's public speaking competition, she knew just what she'd talk about—her granddad and the disease that was taking him away from her.

Last school year, the Troutville girl won a 4-H district competition for her research on ALS and her description of the suffering it caused her grandfather and her family. "...the doctors have already put a feeding tube into my grandpa to prepare for when he can no longer swallow or use his mouth," she told the judges.

"As you can see, my grandpa and family are in a position that a person would not want to be in." The disorder causes progressive muscle weakness and attacks nerve cells and pathways in the brain and spinal cord.

Over time, ALS leads to total paralysis, leaving people unable to move, speak, swallow and, ultimately, breathe.
In many cases, the mind is unaffected.

As yet, there is no cure.

When John Conley, 75, of Southwest Roanoke County, finally died in March, Kelsey was the only family member to speak at his funeral.

"She spoke about ALS and how it was a terrible disease that took him too early," said her mother, Kecia Conley. "And she said how much she would miss him. There was not a dry eye after she was done. I was so proud."

Kelsey, now 12 and a seventh-grader at Read Mountain Middle School, will be walking with her parents, Jeff and Kecia Conley, her 14-year-old brother, Brogan, and other family members at the Walk to D'Feet ALS, a fundraiser at Hollins University on Sunday, Oct. 7.

It will be the third time Kelsey has participated in walks to raise money for ALS research and services to patients.

She's helping her mother and the local committee of the ALS Association's DC/MD/VA Chapter organize the walk.

"It is truly difficult to watch someone you love, who was so vibrant and full of life, so athletic and healthy, lose the ability to move around, to speak clearly and do simple tasks such as turn off a light or lift a glass of milk," Kecia Conley said.

"It is truly heartbreaking because you can't do anything to stop it." But to honor John Conley, his family plans to keep working and try to help stop it altogether.

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