Parents celebrate life of their infant son with benefit in Wause - WLOX.com - The News for South Mississippi

Parents celebrate life of their infant son with benefit in Wauseon

DELTA, OH (Toledo News Now) -

First-time parents in Delta are making the best of a diagnosis that will take their baby boy from them much too soon.

Chris and Sara Brown found out they were pregnant around this time last year. Now, their son's rare stomach condition has made it a challenging, but fulfilling, year.

"We were thrilled," the Browns said. "It was the first grandchild on both sides of the family, so Abram was a big hit."

Sixteen weeks into the pregnancy, excitement turned into fear and worry.

"We went in to find out the sex of our child, and our doctor said something was wrong," Sara explained. "It didn't look right on the ultrasound, and she immediately sent us to a specialist."

It wouldn't be until Abram was born on November 8, 2012, that doctors would truly know what was wrong.

"On day 10 they were able to diagnose him," Sara said.

"It's a rare genetic disorder called Galactosialidosis," Chris added. "It's a condition where he can't metabolize proteins."

The condition is so rare, it was only discovered in 2008, and there have been 50 documented cases.

For the Browns, the diagnosis was heartbreaking. Their son was given six months to a year to live.

"You think about all these things you're going to do with your child, and…some of those things are going to be taken away, so it was hard," Sara said.

Sara has taken time off work as a teacher to be at home with Abram during the day. He eats and gets oxygen with the help of tubes. Pain medications make him comfortable.

Unwilling to let the diagnosis change their outlook on theirs and Abram's life, the Browns live to make him happy, and have embraced and cherished every moment they have with him.

"How can you not be proud to have this as your son?" Sara asked. "He works so hard, he's touched so many lives. He's cute as can be. So how can you not just be beamingly proud? I feel like that's what we are, every step he takes."

Friends and family are hosting a benefit for the Browns on May 10 in Wauseon. It's more than just a way to help with mounting medical bills, the Browns see it as a way to say thank you and celebrate the little boy named after the Abram Tank – they wanted a strong name after they found out something was wrong.

"I think it's a time to celebrate Abram's life," Sara said. "It's a time to say thank you to all those people who have been by our side, all those prayer warriors that we've had who have not given up hope on Abram, just like we haven't."

The benefit will be held May 10 at St. Caspar's Catholic Church in Wauseon, from 4:30-8 p.m. There will be burgers, brats, and hot dogs available for dine in or carry out, a 50/50 raffle and items for auction.

Copyright 2013 Toledo News Now. All rights reserved.

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