TRENTON – Legislation sponsored by Senator Nellie Pou (D – Passaic and Bergen) that would require the screening of all infants born in the State for two rare and serious genetic diseases was approved by the Senate today.
Mucopolysaccharidosis I (MPS I) is a genetic lysosomal disorder, which symptoms appear during childhood and can cause early death due to organ damage. Mucopolysaccharidosis II (MPS II), or Hunter syndrome causes permanent progressive damage affecting appearance, mental development, organ functions and physical abilities.
“By diagnosing and managing these two syndromes early, we can give these children a chance to enjoy a higher quality of life and to live a longer life,” said Senator Pou. “Children with MPS I and II deserve to live a childhood as normal as possible, and systematic screening would help that.”
Under the bill (S-668), systematic screening of all infants born in New Jersey would start six months after technical conditions are met and federal regulations allow it.
“There is nothing worse for a parent than seeing their child taken away by something they can’t fight,” added Senator Pou. “With this bill, we want to give families a chance to fight the disease.”
The bill is designated as the “Let Them Be Little Act” to recognize that children with Hunter Syndrome are often unable to enjoy the simple pleasures of youth because so much of their lives are occupied with undergoing medical treatments and tests rather than just being kids.
The Senate approved the legislation by a unanimous vote. It now heads to the Governor’s desk.