Local young man fights for his life

October 12, 2016

 

COLLINS, Miss. - When you think of a 23-year-old, you imagine someone who is about to start his life, but a curveball left him battling for his life.

 

Patrick’s mother, Patt Ellis said, "Adrenoleukodystrophy, it is a genetic disorder that affects the myelin in the brain. Once the myelin is taken away from the nerves, it kind of takes away the function of the nerves. And once the nerve is not functioning, the body just deteriorates."

 

When Ellis was growing up, her brother had adrenoleukodystrophy when he was 11, and died when he was 23.

 

When her sons were young, she had them both tested for adrenoleukodystrophy. Both carried the trait, but were fine until Patrick started feeling sick.

 

Patrick had trouble walking and his speech was slurred.

 

"It was an ACD (adrenoleukodystrophy) problem. He already had too many lesions in his brain to where they couldn't do anything as an adult for him. He was already a high risk," said Ellis.

 

In just six months of his diagnoses, Patrick was confined to a wheelchair, suffered incontinence, and required a feeding tube.

 

"We were basically told to plan his funeral. He's a social butterfly. He has seen friends come. He's seen friends go. He's had a lot of impact on him and not only physically. Mentally, emotionally, it's all affected him," said Ellis.

 

But, there is still hope.

 

"We don't know what tomorrow brings. We know that tomorrow, we can go further down. We're at a standstill with this disorder. We're not supposed to get better. But, we are getting better day-by-day with the good lord's help."

 

1/17,000 males are affected with adrenoleukodystrophy.

 

Ellis said California, New York, and Connecticut are now beginning to test every newborn baby for the disease.

 

There is a petition you can sign to make it required for all states to do genetic testing for newborn babies. You can click here.

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