DOH marks 50 years of screening newborns

[hrmjustin]

By TIFFANY BROOKS

Elisa Seeger stood behind the podium choking back tears as she told the story of her son Aiden.

Aiden, who died last year, suffered from adrenoleukodstrophy, or ALD, a rare genetic disease that affects the nervous system.

When Aiden was six, his teachers noticed he was reading and writing very closely to the page. Believing Aiden simply needed glasses, his parents took him to see an ophthalmologist who found no problems. After a second visit with a different ophthalmologist, Aiden's parents were referred to a neurologist who performed an MRI. The test revealed that Aiden did have ALD, and a year later, the family traveled to Duke University Hospital to get a bone marrow transplant, however, Aiden passed away in March 2012.

At the 50th anniversary of New York state's newborn screening program, Health Commissioner Dr. Nirav Shah, announced that after the passing of Aiden's Law, the state will begin newborn screening for ALD in December.

Read more at http://www.legislativegazette.com/Articles-Top-Stories-c-2013-08-06-84657.113122-DOH-marks-50-years-of-screening-newborns.html

[hedgehog]

1. Infant screening meant my niece's sickle cell disease was identified days of her birth!

[hrmjustin]

2. How is she doing?

[hedgehog]

3. Very well - because her problem was identified early, her parents have been vigilent

in order to prevent a crisis and quick to treat should one develop. She's 18 and has never been hospitalized.

[hrmjustin]

4. So happy to hear that. May she have a happy and healthy life.