Ryker steals the stage at benefit concert for neurofibromatosis
On April 3, Ryker Bennett, a 5-year-old with neurofibromatosis, single-handedly raised awareness about the disease at a benefit concert.
Ryker’s continuous smile and energetic dance moves stole the show.
According to the Children’s Tumor Foundation, NF affects more people than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined, yet few people know what this disease is.
NF’s severity differs from patient to patient, but ctf.org explained that NF “causes tumors to grow anywhere on or in the body.”
Kierra Gibbons, a junior majoring in social work, saw a need to raise awareness about NF, and used the opportunity her Management 3110 class provided to do so.
Management 3110 is a class that requires students to either participate in 100 hours of service or raise $1,000 for a charity of their choice.
Gibbons’ group decided to plan a benefit concert to raise awareness about NF because of her relationship with Sarah Bennett, whose son Ryker has the disease.
Although Gibbons’ relationship with Bennett’s son hadn’t extended past seeing him in Bennett’s Facebook posts, Gibbons was already smitten by this brave, happy child.
“I’ve never met Ryker,” Gibbons said. “But Sarah’s posting of his pictures, he’s always smiling in his pictures. He’s always so courageous.”
Risha Price, a senior studying economics, said the group agreed with Gibbons on the need to raise awareness for NF.
“We saw a need there and decided to throw the concert and raise money for research for that,” Price said
The planning for the concert began in January. Price said it was the first time any of them planned a benefit concert, which made it difficult.
Even simple tasks such as filling the change box required thought and planning.
“For the concert itself, having a change box, it’s like, where do we get the change to start out the change box?” Price said.
Members of the group even had to consider using their own money to hand out as change at the benefit concert.
The group’s hard work paid off because the bands performed, people donated and Ryker attended to help raise awareness.
Ryker was 4 months old when he was diagnosed with NF. He has tumors on his face, neck, orbital socket and brain.
Because there is no cure for NF, Ryker has gone through several debunking surgeries and is currently on a clinical trial of chemotherapy to help shrink his tumors.
Bennett said Ryker used to be scared of his chemotherapy shots.
“He’d cry, and now he likes to scream for them, so he screams for about five seconds, and then he’s happy about five seconds later,” Bennett said.
Ryker’s smile at the show was evidence of his positive attitude.
“A couple years ago he was very shy and being around new people was hard,” Bennett said.
At the concert, it was clear that Ryker had overcome his shy phase as he danced on all fours, only stopping to strike the occasional pose, throwing a hand in the air and turning to give his audience a smile.
Even people like Carson Garner, a sophomore majoring in physical therapy, who went to the concert to support their favorite band, turned around to catch a glimpse at the boy’s dancing.
For Ryker, the night consisted of his favorite games: dancing, tag and “superhero,” where he played the Hulk.
By the end of the night, $645 was raised. The money will be donated to the Children’s Tumor Foundation where it will be used for research.
Gibbons’ group will continue to raise money this semester by selling items on campus near the LDS Institute building.
Bennett hopes that people can simply raise awareness about NF.
“Some people don’t know what it is, and when they see him, they ask you know ‘What’s wrong with him?'” Bennett said. “It’s hard because he’s just a kid, and he wants just what every kid wants — to have friends and be normal.”
— whitlewis7@gmail.com