Sebastian Boice, a 17-month-old Battle Creek boy, is probably more concerned with snuggling with his mom than the big concert being put on for him. They're doing it anyway.
Project Cypher IV, the hip hop charity concert created by Ryan Evans — HighTyde when he's performing — will happen at Shakespeare's Pub, 241 E. Kalamazoo Ave., Kalamazoo, at 7 p.m. May 20. It's the fourth year for the concert and more than a dozen performers are scheduled. As in past years, they will raise money and awareness for an area family.
The entertainment includes performers from multiple genres, such as country singer Erika Scherry.
Aixa Boice, Sebastian's mom, was holding the sleeping boy in their Battle Creek home Monday when she talked about his story. Sebastian was born with two encephaloceles, which are collections of fluid that form on the outside of the skull. He also has Dandy-Walker, which the National Institutes of Health describe as a malformation of the cerebellum that affects movement.
Click below to hear a new episode of "The Jump Page" featuring HighTyde. On a mobile device? Click here to listen.
None of this was known to Boice before she went for an ultrasound at Grace Health.
"I was excited; we were going to find out the sex," Boice said. "Then they told me that the doctor wanted to talk to us, and she was like, ‘There’s something wrong with the baby’s head."
Boice said her doctor talked to her about ending the pregnancy. She and her husband, Steve Boice, didn't want to do that.
"They told me he wasn’t going to live, and I was like, ‘I’m still going to give him a chance,'" Boice said. Wanting more options, they saw doctors in Kalamazoo.
"They told me he might not live but if he did, he was going to die right after birth," Boice said. "And if he did live, he was going to have a breathing tube, he wasn’t going to eat and he was just going to stay in the hospital."
Then, Boice said, her sister found someone with a 3-year-old son with similar problems. That led Boice to support groups, and eventually she was going to University of Michigan's C.S. Mott Children's Hospital every week for ultrasounds.
"We found out he had two encephaloceles, but it was just fluid," Boice said. "If he had brain outside that was going to be bad, but it was just fluid. His head was getting bigger and he developed hydrocephalus."
It was also around that time Boice found out about Dandy-Walker.
"So I found another support group on Facebook and there’s people that are like, 29, 30, and they have families," Boice said. "They have jobs. They’re super-smart."
When Sebastian was born, he was breathing on his own. He does have a shunt that drains fluid from his head, and there are some surgeries in his future. But as he dozed in his mom's arms, he didn't seem stressed out about it. In fact, he rolled over for the first time two weeks ago.
Sebastian loves his brother, Adrian Cole. He loves grabbing nearby faces, and the color yellow. It's too soon to know if he likes hip hop, but he might when he gets older and hears about the concert.
Evans said telling the stories of families like the Boices' is one of his goals.
"It’s a lot of knocking on doors," Evans said. "A lot of these people I don’t know ahead of time. I ask friends, ‘Hey, do you know someone that may be struggling, that has a story to tell?’ We try to help out as many people as possible."
Evans said last year's concert was the most successful yet, selling out and raising $3,300 for Battle Creek's Jaxon House. But it's also about Evans' own community.
"Especially in the hip hop genre, there’s a lot of negative connotation that kind of comes along with it," Evans said. "People are maybe a little afraid to come to shows just because of the violence they think might be there. I’m kind of trying to shake that stereotype and say, 'Hey, we also do good with the community.'"
As for plans for the money, Boice isn't sure what her family will do with it. They might spread the love.
"I have a couple friends that have the same thing," Boice said. "Maybe we'll help them too."
Contact Andy Fitzpatrick at 269-966-0697 or email@example.com. Follow him on Twitter: @am_fitzpatrick.
Go to this story at www.battlecreekenquirer.com or soundcloud.com/thejumppage to hear more of the interview with Ryan Evans.