Rible Bill that Provides Hunter Syndrome Screening for Infants Clears Assembly Panel

assemblyman david rible tlsBipartisan legislation sponsored by Assembly Republican Conference Leader Dave Rible that provides for screening newborn infants for Hunter syndrome was approved by the Assembly Women and Children Committee Monday.

Hunter syndrome is a rare genetic disorder which causes permanent, progressive damage affecting appearance, mental development, organ function and physical abilities.

“Hunter syndrome is extremely rare, but for youngsters who suffer from it and their families, the impact is devastating,” said Rible, R-Monmouth and Ocean. “Through early screening and diagnosis, and with appropriate medical management, we can improve the quality of life, and extend the lives, of those children.”

Rible’s bill, A-1101, is called the “Let them Be Little Act.” Children with Hunter syndrome are often unable to enjoy the simple pleasures of youth because their lives are spent undergoing medical tests and treatments, rather than just being kids, Rible noted.

“As a father, I know how important a ‘normal childhood’ is, not only for the youngster, but for parents and siblings, as well. This bill delivers a bit of hope for families who face the pain of a Hunter syndrome diagnosis in the future,” Rible said.

Hunter syndrome primarily affects males. The syndrome does not impact all people the same way, but Hunter syndrome is always severe, progressive, and life-threatening. By late childhood, the syndrome may lead to severe mental disability.

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