When Jennifer Palermo was informed of the diagnosis, she admits feeling 'so incredibly guilty' that a gene she passed onto her daughter caused this disease.
It was a moment of joy that turned into tragedy upon tragedy. 'Our only child, our IVF miracle, was dying,' Jennifer Palermo said.Palermo and her husband, Philip, 43, have shared their devastation after believing that their baby might have autism, only to discover that she has a rare, fatal condition for which there is no treatment.
How do you accept that as a parent?'The National Organization for Rare Disorders estimates that CLN1 only affects around three in every 100,000 births across the U.S., and symptoms will usually show between 2 and 24 months old.Infants who have developed perfectly fine up to that point will begin to regress, their abilities will decline and progressive vision loss occurs.
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