By Josette Keelor
When Chris Morrison was 17 years old, he was diagnosed with neurofibromatosis and told he would not live to 21. But he was never a quitter. He lived to 34 before he succumbed to the disease that left him deaf and his body riddled with tumors visible only through the pain he experienced daily. Still, he never lost his humor, passion for life or his love for family.
On Dec. 1, in remembrance of Morrison and the one-year anniversary of his death on Nov. 27, 2011, his family and friends will hold the "Never Forget" Benefit at Brewbaker's Restaurant, on the Loudoun Street Pedestrian Mall in Winchester.
The benefit will raise funds and awareness for the disease that affects thousands of Americans but also will honor Morrison's life and the impact he has had on those around him.
Morrison's family, who gathered on a recent evening to talk about Morrison and the upcoming benefit, remembered him cheerfully, in a way they all said he would have preferred to be remembered.
"He did not feel sorry for himself," said his mother, Sandra Slifer. "He would not let anyone feel sorry for him."
Slifer's sister, Donna Shackelford, agreed, "He never ever, ever said look at me, feel sorry for me."
Morrison was diagnosed with NF2, which affects one in 25,000 people in the United States, his mother said, and presents itself with tumors that grow within the body. When he was diagnosed, Morrison had a tumor on each ear and a non-malignant one on his spinal chord. He had surgery to remove the tumor on one ear, she said, but the one behind the other was wrapped around his brain stem, making it inoperable.
NF1, the most common of three genetically distinct disorders, is also called Recklinghaus disease and presents with tumors outside of the body, according to the National Institute of Neurological Disorders and Stroke. The third, called schwannomatosis, is the rarest form and manifests with tumors everywhere in the body except on the vestibular nerve. NF2, conversely, forms characteristic tumors called vestibular schwannomas.
"An estimated 100,000 Americans have a neurofibromatosis disorder, which occurs in both sexes and in all races and ethnic groups," the institute wrote on its website at www.ninds.nih.gov. Most of the tumors are benign, the site says, but some can become cancerous.
"None of the hundreds of tumors he had ever went cancerous," Slifer said of her son.
Symptoms of NF1 to look for are café-au-lait spots known as neurofibromas, and freckling in the armpit and groin area, evident at birth or shortly afterward and nearly always by the time a child is 10 years old, the site says. In the case of NF2, about half of affected people inherit the disorder, and the hallmark symptom is the presence of slow-growing tumors on the eighth cranial nerves, which affect hearing and balance.
Morrison's family learned Sign Language when Morrison began to lose his hearing, and his nieces and nephews have known for most of their lives how to sign.
"I think it's nice that I know how, because many people can't hear so I think it makes it easier," said Morrison's niece, Kaelyn Morrison, 11. Being able to communicate with the children in his family was not Morrison's only goal, Kaelyn said. He genuinely enjoyed being with them and would endure whatever pain necessary if it meant more time with family.
"He very much cared about all the little ones," Kaelyn said.
The idea for the benefit came from what the family believed Morrison would have wanted his legacy to be, Slifer said.
"We just decided he never wanted someone to go without, so we're trying to do what we can," she said.
Kaelyn's mother, Laura Rhodes, who took over ownership of Brewbaker's in July, volunteered the restaurant for the evening, and Shackelford's husband Red, a guitarist in the band The Rumblers volunteered his band as entertainment.
When he told area rock and 80s hard metal band Blackmail about the benefit, his longtime friends agreed to headline the event, which will give all proceeds to three foundations: Jubilee Kitchen and Winchester Area Temporary Thermal Shelter, both with First Presbyterian Church in Winchester, and the Neurofibromatosis Foundation.
"It was never, 'Oh let's think about it,'" Donna Shackelford said. "It's 'OK.'"
"Within days," she said, "everyone was like, 'Yeah. Where, when?'"
Said Kevin Levi, drummer for Blackmail, "This is a good thing man; this is a good thing." Still, he stressed, "It's not about us, it's about this, the benefit."
Both bands will play for no cost, and Levi said, "We're honored to do it."
"Basically it's a good cause that we can all agree on," he said.
The benefit will run from 4 to 8 p.m., with a $5 charge and other donations accepted. Door prizes and a 50/50 drawing will take place, and prizes will include an autographed photo of the Dallas Cowboys, a framed photo signed by Troy Palamalu of the Pittsburgh Steelers, and a stuffed animal moose donated by the Warren County Fire and Rescue. Also, the first 80 or so people who arrive to the event will receive a guitar pick.
When remembering her son recently, Slifer spoke about his love of music. That love did not die when he lost his hearing, and she recalled him telling her once, "You don't lose what you had, you change it."
Shackelford agreed, "The last thing Chris said to me was, 'Uncle Red, rock on,' with the thumbs up." He and his band mates plan to do just that.
"It isn't so much of what we play, it's what we give back," Levi said, hoping for a big turnout. "I think we'll pack it. We'll pack it."
The "Never Forget" Benefit will take place at Brewbaker's Restaurant, at 168 N. Loudoun St. in Winchester, from 4 to 8 p.m. Dec. 1. For more information, call 535-0111 or visit www.brewbakersrestaurant.com. For more information about Jubilee Kitchen or WATTS, visit www.firstchurch-winchester.org or watts-shelter.org. For information about the Neurofibromatosis Foundation, visit www.ctf.org.