Family holds fundraiser to draw awareness to rare disease
Sharon Slifer’s son Chris Morrison died of neurofibromatosis (NF) five years ago. Today, she hopes to honor him by raising awareness of the rare disease.
At 7 tonight, Slifer will hold an event called “Paint to Cure NF” at Brewbakers Restaurant in Winchester. The event will raise funds for the Children’s Tumor Foundation, an organization that funds neurofibromatosis research and awareness campaigns.
May is NF Awareness Month, Slifer and her sister Donna Shackelford noted. Awareness, they said, forms a large part of why they want to hold the event.
“That’s all we want – – is we want people to know,” Shackelford said.
That’s because, although the most common variant of NF, NF1, affects 1 in 3,000 to 4,000 people, according to the National Institute of Health’s genetics home reference guide, few people are aware it exists.
“When she told me what my nephew had, I had no idea,” Slifer said.
Morrison had the disease for 17 years before dying at the age of 34, Slifer said. The disease brought him constant pain, as tumors inside of his body pressed against nerves. Over time, the tumors grew larger, increasing his pain levels.
“The pain level increases exponentially,” Shackelford said.
Despite that, Shackelford and Slifer described Morrison as a positive person who dealt with the disease.
“Chris, you know, he had dreams,” Shackelford said. “And when NF took those dreams, you didn’t hear him crying to mum about it. And you wouldn’t have known the pain or anything that he was going through.”
According to Slifer, Morrison mostly stayed off pain medicine until the end of his life.
“He worked until he couldn’t stand,” Slifer said. “He was just adamant about the fact that he was going to ‘be normal.'”
Before Morrison died, Slifer said, she did not actively raise funds for the Children’s Tumor Foundation or other organizations that raise money for NF. She said that she had proposed to Morrison doing something like Relay for Life but for neurofibromatosis instead of cancer.
“He was like, ‘Mom, I don’t want to be the poster boy for NF,'” Slifer said. “I want to live my life and be normal.”
But since Morrison’s death, Slifer has become increasingly involved in raising funds for NF — especially as she has seen people diagnosed with the disease at younger and younger ages. She credits the early diagnosis with increased awareness about the disease and says that Morrison likely had the disease when he was 7 years old.
She said that at that age, when he was in the second grade, his doctor found an odd static in Morrison’s brain but couldn’t say what was causing it.
“The tumors were so small they could not be seen,” Slifer said.
Slifer said that she brought in a person from outside of Winchester to hold the paint night because that person is “extremely nice with helping people.” She said that at painting nights, you show up at a location with a ticket and are provided with painting materials and instructions. No experience required.
Slifer said that everyone will be painting turtles, noting that she chose the animal because of the restaurant they’ll be painting in.
“Brewbakers has this thing about turtles, so I chose the turtles because we’re going to be doing it there,” Slifer said.
But Shackelford, who says that she “can’t paint my fingernails,” has her doubts about why Slifer chose the animal.
“Honestly, I thought you did that to torture me because it’s my first time,” Shackelford said. “And I can’t paint or draw.”
Tickets for the event cost $45. Fifteen dollars of each ticket will go to the Children’s Tumor Foundation.