Klarides Supports Legislation to Screen Newborn Babies for Life-Threatening Nerve Disorder

State Rep. Themis Klarides (R-114) championed legislation on Wednesday that requires screening of newborn babies for a life-threatening genetic disease of the central nervous system called adrenoluekodystrophy (ALD).

The screenings cost $1.50 - $2.00 per test and make it easier for physicians to identify and treat the disease, which can suddenly affect boys from birth to one year old. If untreated, ALD causes loss of speech, muscle function, sight and the ability to consume food and liquids by mouth.

“ALD is an agonizingly painful disease that can end lives and devastate families,” said Rep. Klarides, a member of the Public Health Committee. “This is a rare opportunity to spend a few dollars that will truly make the difference between life and death.”

The legislation was prompted by 24-year-old Bryan Kelley of Branford who, with the help of his parents Jack and Jean, has fought the rare disorder for years.

Brian’s mother, Jean Kelley, had this to say about the bill, “It’s a way to save lives. We’re talking about lives, lives that won’t happen without the test.”

Screening of newborns has saved or improved the lives or more than 12,000 children to date.

ALD affects the tissue lining around the adrenal glands and nerve cells. The disorder comes with different levels of severity, with the most severe form causing very rapid degeneration of the nervous system in young boys.

Earlier this year Rep. Klarides played an instrumental role in generating awareness and support for the measure, and spoke out at a press conference alongside the Kelley’s in favor of this bill.

Senate Bill 465 passed unanimously in the House and Senate, and now moves to the Governor for further consideration.