Bill to screen newborns for rare disease heads to governor

  ·  Jose Gaspar, Bakersfield Now (KBAK & KBFX Eyewitness News)   ·   Link to Article

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BAKERSFIELD, Calif. (KBAK/KBFX) - After more than a year of lobbying lawmakers in Sacramento and testifying before committees, Jeremy Hill Jr. could see his dream come true.

The 14-year-old high school freshman suffers from a rare genetic disorder called Adrenoleukodystrophy, or ALD for short.

ALD affects mostly boys that causes seizures and can rapidly lead to a vegetative state and death. In Jeremy's case, it has robbed him of his sight and normal life.

"I have a lot of damage in my brain," said Jeremy.

But the young man and his father Jeremy Hill Sr. have joined others in the ALD community in pushing lawmakers to pass a bill that would require all newborns in California be screened for ALD.

"To start saving kids lives, that was the whole purpose of this," said Hill Sr.

Good news came this week when the bill, AB 1559 by Democratic Assemblyman Richard Pan of Sacramento cleared both the Senate and the Assembly.

"It's been a roller coaster, up and down," said Hill Sr. "It's (Jeremy Jr.) wish and that's all he talks about."

The 14-year-old was given a wish by the Make-A-Wish Foundation. But rather than choose a trip to Walt Disney World or some other place, Jeremy told his parents what he really wanted: a law to screen newborns for ALD, so that other boys would not suffer what he has had to endure.

"The words that came out of his mouth was just the most amazing," said the father. "He told his mom that he didn't want them to have to go through what he did."

AB 1559 now heads to the governor's desk for his signature. Father and son are praying Governor Jerry Brown signs the bill. And they are asking for help.

"We need letters to go to governor, we need 'em sent as soon as possible," said Hill Sr.

Letters of support can be sent to: Office of the Governor, State Capitol, Suite 1173 Sacramento, CA. 95814.

Or, they can be submitted through the governor’s website.