Branford family supports proposal for universal infant screening

WTNH TV

Updated: Feb 27, 2013 6:32 PM

(WTNH) -- State lawmakers from both political parties are joining together to support a bill that would require universal infant screening for Adrenoleukodystropy commonly known as ALD.

Jack and Jean Kelley and their 24-year-old son Brian of Branford went to the Capitol today to help announce the bi-partisan proposal.

The rare genetic disorder causes very rapid degeneration of the nervous system in young boys but with a relatively in-expensive test can be treated early to avoid most of the severe complications.

"We started 'Brian's Hope' in honor of our son Brian. We hope that he will not live in vain with the challenges he has faced and this can be his legacy to pass this on that other boys will not have to suffer the affects of the disease," said Jean Kelley.

Advocates of the universal ADL infant testing say that the screening can save millions in medical costs down the road with prevention.   The disease is said to affect 1 in about 20,000 births.

For more information on 'Brian's Hope,' visit www.brianshope.org

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