Robbie Powell never forgot his buddy's favorite color.
A seventh grader at Bob Courtway, Robbie lost a lifelong friend in August when Ben Patterson died of Neurodegeneration with Brain Iron Accumulation (NBIA). A rare, inherited, neurological movement disorder causing degeneration of the nervous system, NBIA left Ben unable to walk or talk as his time on earth grew short, but Robbie was a friend to the end and beyond.
Danny Powell, Robbie's father, said the two boys had been friends since kindergarten. When Ben became unable to walk, Robbie went to visit him at the Patterson home once a week. After Ben's death in August of this year, Robbie had the idea to sell silicone bracelets to raise money for NBIA research.
"I was thinking of a way to raise money for it, and it popped into my head," Robbie said. "I have a lot of bracelets like this. I brought it up to my friend, and she helped me get it off the ground. We started selling them at school and at Wampus Cat football games."
Dr. Bill Patterson, Ben's father, said NBIA is extremely rare, and children diagnosed with it usually die. For that reason, there is not much awareness of it. It is one of a group of rare diseases called "orphan diseases."
"It's not that prominent of a disease. It doesn't get publicity like the others to find a cure," Patterson said. "It needs all the funds and help it can get to help these people from having to go through what we suffered."
He added Robbie and the friends who helped him sell bracelets raised $1,500 for NBIA research. The bracelets are green, because Robbie remembered green was Ben's favorite color, Patterson said. The bracelets are imprinted with the words "Live 4 Ben."
Robbie said when they sold bracelets at football games, they had a board on display with pictures of Ben. They told people what the proceeds of the bracelets were for, and people were stunned, he said.
"They would say, 'Wow.' And they would usually get one or two," he said.
Sloan Powell, Robbie's mother, said of the bracelets, "I thought it was fabulous. It was a wonderful way to honor Ben."
She said Robbie told her, "I don't want any other family to have to go through that."
Sloan Powell said it has been tough on her son to lose a close friend.
"As a parent, it's one of the hardest things you have to go through when you see your child hurting. It was tough on all of us. It's hard to imagine what they're (the Pattersons) going through," she said.
Asked how she will remember Ben, Sloan Powell said, "I will always remember when he was baptized. The pure joy on his face, how that was communicated. He just beamed. It was unbelievable. I think you could talk to anybody there that day and they would say the same thing."
She went on, "He couldn't talk at all by the end, but he communicated. You could ask him yes or no questions, and he could raise his arm. Mainly through his face is how he communicated. He had mischievous looks. He was a great guy. Full of life and joy. That's how I'll always remember him."
Ben died on a Tuesday morning in August. On the Friday before, Robbie had come to visit, and it was the first time Ben had smiled in weeks, Patterson said.
Ben's death was expected, as his health had declined, his father said.
"We sure miss him," he said.
Patterson said his wife, Kim, nominated Robbie for a youth humanitarian award. The winner will be announced in the summer.
He added, "We still try to include (Robbie) as part of our family. We don't want to lose that contact. The heart of a kid that can give of his time and self for a friend at that young of an age is really special to us and has meant the world to us."
Live 4 Ben bracelets are still available by contacting the Powells or the Pattersons. The Pattersons may be reached at 501-327-4837 or kpatt@conwaycorp.net.
(Staff writer Rachel Parker Dickerson can be reached by e-mail at rachel.dickerson@thecabin.net or by phone at 505-1277. Send us your news at www.thecabin.net/submit)
