Oro Valley family living with ALS looks to Congress after 'chall - WTVM.com-Columbus, GA News Weather & Sports

Oro Valley family living with ALS looks to Congress after 'challenge'

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ORO VALLEY, AZ (Tucson News Now) -

The ALS Association reported on Friday that donation dollars surpassed $53 million since the start of the Ice Bucket Challenge, and one family in Oro Valley is grateful for the awareness and generosity that the challenge has produced.

Matthew Gentle was diagnosed with a rare form of ALS in November 2013. Since then his family has learned to make the most of their time with him because that time is running out.

“If we get a year we'll be lucky," said his wife, Beth Gentle.

The couple will celebrate their 20th wedding anniversary next month. Lately, Friday nights are movie night for the Gentle family. Sons, Scott and Mikey, join their parents in bed for quality time.

“Family is more important than anything else, right?,” Beth asked her sons.

Popcorn is ready in time for the movie, but Matthew can't have any. He can't eat. He can't speak.

"I miss the taste of food," he said through a type-to-speak tool on his tablet. “Tell them it sucks.”

Beth admitted that it does now that she's caring for the children, her husband and any other chores around the house.

She said the VA provides 10 hours of assistance each week, along with boxes of supplies like gloves and food. The cans of formula pile up because Beth said they're no good for Matthew. Either they're too thick for his feeding tube or not nutritious enough to help.

More federal support would help, according to Beth. She said ALS research does not receive the attention or the money that other diseases do. She urges everyone to contact elected leaders on Capitol Hill.

“You have to let them know,” she said. “It's here and they need to find a cure.”

Scott, 12, is already focused on awareness. About to celebrate his Bar Mitzvah, Scott's Mitzvah project centers on the disease that has a hold of his father.

“They may not find a cure in his lifetime but hopefully in their lifetime," she said.

The brothers both said the family's current situation has them angry and depressed. Beth and Matthew believe their children are strong, but it's not easy in the face of ALS.

“It tears families apart,” typed Matthew.

Two upcoming events in Tucson will benefit the battle against ALS. September 6 is Bite Night at The Westin La Paloma Resort and Spa. Walk to Defeat ALS is October 18 at Reid Park DeMeester Performance Center.

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