“His battle is our battle:” Toddler fights rare genetic disorder, community rallies during basketball games

Posted at 5:18 PM, Jan 30, 2017
and last updated 2017-01-30 17:18:42-05

GRAND RAPIDS, Mich. -- During Monday evening's varsity basketball games at Tri County High School as they play Newaygo high school, a two-year-old from Grand Rapids will take center stage.

Crew Berens, 2, giggled into FOX 17's camera Monday morning at home, playing with his twin sister while he hugged his seven-month-old baby sister.

"Hi baby!" he said to his youngest sister.

Berens is just like any toddler: happy, smart, and likes to get his hands on the toys in front of him.

“It’s not fun for anyone to take a chemo medication let alone a toddler, so [Crew] has his rough days so then he has where he’s perfectly fine days," explained Hilary Berens, Crew's mother.

Then you learn Crew is battling a genetic disorder that has no cure. When he was 13-months-old Berens was diagnosed with Neurofibromatosis 1, or NF1.

NF1 affects roughly one in 3,000 people. In Berens' case it was a genetic mutation, developed by chance, that now grows tumors along his nerves in his neck, cheek, mouth, tongue and brain. The tumors affect his speech, and because they grow along his nerves removal in general is a major risk.

“He has a mass that’s near his brain stem it’s growing into his sinuses like tree roots," said Hilary Berens.

Berens' family is his biggest advocate: from pushing for access to clinical trials to raising funds for medical bills and travel when necessary to his specialist in Alabama.

Monday night at 5:30 p.m. then 7 p.m., the Tri County High School varsity basketball teams take on Newaygo High School and will host a fundraiser for Berens' lifelong medical fund.

To donate, see Berens' care page here.

Tri County Varsity Girls Basketball Coach Chris Overbeek says the team is ready to help Berens and already wrote him into their playbook.

“We put a play in last night and I said, 'What do we want to name it?'" Overbeek said. "And the first thing out of one of our girl’s mouth was, ‘let’s call it Crew.’ They’re aware, they’re excited to meet him.”

“It’s very moving," said Hilary Berens. "It’s very overwhelming to feel such support.”

Between regular doctor visits, procedures, and time to just be a kid, Berens and his family are raising awareness to help find a cure, and growing stronger each day.

“So often we just have to be strong and power through," said Hilary Berens. "We have our weak moments where we break down, but you know we have to be strong for our kids and for each other," she said just as Berens crawled on her lap smiling.

To stay updated on Berens' story and upcoming fundraisers see his Facebook page here: "His Battle is Our Battle: Crew Berens & NF1."

Another large fundraiser is scheduled for Saturday, Feb. 25 at Cummings Elementary School. It will be a silent auction, dinner, raffle with entertainment from 4 p.m. until 8 p.m. located at: 4261 Schoolcraft St. SW in Grand Rapids.