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Community holds fundraiser for boy, 2, with rare disease

Posted at 10:43 PM, Feb 25, 2017
and last updated 2017-02-25 23:14:50-05

GRAND RAPIDS, Mich. — Community support continues to pour in for a two-year-old boy battling a rare disease.

Crew Berens was born with a rare genetic disorder known as NF-1. On Saturday, his community continued their showing of support.

It was a carnival-like atmosphere Saturday afternoon, all for one very special two-year old boy.

"People have stepped up and gone out of their way to show love for him and care for him and care about our family, "said Hilary Berens, the boy's mother.

Crew was born with a rare genetic disorder called Neurofibromatosis, more commonly known as NF-1.

"With Crew, he can grow tumors on his nerves and pretty much anywhere," said Scott Berens, the boy's father. "He currently has tumors on his cranial nerves and on his neck and along his jaw."

It's a painful disease with no known cure.

"It's just a lot of hard things that a two and a half year old shouldn't have to go through, but he's a tough little guy," said Hilary Berens.

On Saturday, a fundraising event was held for Crew and his family at Cummings Elementary School in Grand Rapids. The event was complete with dinner, silent auction, face painting, balloon animals and a photo booth.

"There are strangers we've never met, businesses in the community, family and friends," said Hilary Berens. "We have several sponsors who've sponsored the event who have been amazing. It just shows you that there's a lot of good people."

The fundraiser was all to raise money for a family dealing with medical costs in the tens of thousands every month.

"We just really want to keep bringing awareness to it and we want research to keep happening," said Hilary Berens. "We want a cure and we want something that can help him and help others.

If you'd like to contribute to help Crew and his family, visit their fundraising page. You can also follow along with Crew's treatment on their Facebook page.