Family battling ALS supports the Steve Gleason Act


HINDS COUNTY, Miss.–Around this time last year the ALS Ice Bucket Challenge was really taking off, the organization received a spike in donations and raised awareness for the fight against a debilitating disease with no cure.

WJTV News Channel 12’s Lucy Dieckhaus shows us how some new legislation is giving those who suffer from ALS better access to a valuable tool.

“It will paralyze my body but not my soul, mind, and spirit,” said Julie Faul.

Julie Faul has battled ALS for nine years and her mother Patrisha said ALS has stripped Julie of her independence.

“We have to take her out of bed with the lift, dress her, feed her,” said Patrisha Faul.

Dr. Vedanarayanan of University of Mississippi Medical Center said A-L-S may start off gradually but the disease eventually consumes the person.

“A person that is capable of doing things and being employed to being completely disabled,” said Vedanarayanan.

The Steve Gleason act is expected to be signed into law any day now, and it will provide Medicare and Medicaid patients access to a speech generating device.

For families battling ALS, these speech generating devices are much more than a computer. Julie uses her eyes like fingers, and it gives her the ability to continue life as normal as possible for as long as possible.

Julie wrote me this email using her speech generating device she says communication lifeline to the world, and it gives her a sense of independence that ALS would otherwise take away. The Steve Gleason Act insures that people like Julie have a voice.

Julie’s daughter Sarah Drennan said the device has broken down a barrier that the disease built up.

“The ALS doesn’t stop anything she acts as young as I am,” said Drennan.

“It can take away your ability to do a lot of things. But it definitely can’t take away your spirit,” Drennan said.

Although Julie does call her ALS diagnosis a death sentence she says she has hope..

“She will never give up,” said Faul.

The ALS association of Louisiana and Mississippi has equipment available for people suffering with ALS.

The loan closet items range from adaptive eating utensils to a $50,000 powered wheelchair.

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