Pinoy family affected by ataxia hopes to raise awareness on rare disorder

By Yvee Tadeo Guevara, ABS-CBN North America Bureau

Sept. 25, 2014

LA VERNE, Calif.- Ataxia is a group of rare degenerative neurological disorders that are often fatal. About 150,000 people in the U.S. are affected by Ataxia, which is a lack of muscle coordination.

Fifteen-year-old Moira Greenway is the eldest daughter of former teen star Bunny Paras and radio host Mo Twister. She has been suffering from Friedreich’s Ataxia for almost eight years now.

“She was around seven-years-old, like six or seven-years-old,” said Bunny Paras, mother of Moira. “We saw that she was getting wobbly, slurry speech, and more clumsy … Because it’s progressive, we saw talagang happening na every year it got worse and worse and worse.”

Moira was an active kid. But Ataxia has limited her way of life.

“I was able to do kickball and other little games that we did with other classmates,” said Bunny. “But right now I cannot do anything.”

“It’s so hard to think – are you going to lose your child?” said Moira’s mother. “Is she gonna last how many years? How’s the progression gonna be?”

Friedreich’s Ataxia in children has a more rapid progression and is often associated with vision impairment, scoliosis, diabetes, and serious heart problems.

“It’s kind of like people are bumping into each other everywhere,” said Moira. “It’s like there’s a higher tendency for me to fall or something not good to happen.”

Though there are still no treatments and cure for Ataxia, Moira remains optimistic.

“Despite the difficulties, I feel blessed to be around people that care so much, and people that give me support,” said Moira.

With the support of her family and friends, Moira was the top fundraiser of the event.

“Thank you so much for helping me with your donations and your funds, and even just your prayers,” said Moira. “It helps a lot.”

“It is important to me to have all the support, even from people we don’t know,” she continued. “I wish that we can just find a cure for it already.”

All donations and proceeds of the event will go to the National Ataxia Foundation to help provide programs and services for Ataxia families and fund much needed research for treatment and cure for this debilitating disorder.

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