Pennsylvania Girl Hannah Ginion Suffering From Krabbe Disease Passes Away
MyFoxPhilly.com reported that the little Pennsylvania girl after which Gov. Tom Corbett signed 'Hannah's Law' passed away. As per local sources, Hannah Ginion was born with Krabbe disease, a rare genetic disorder in which the protective myelin coating from nerve cells gets stripped.
State Rep. Angel Cruz, D-Philadelphia said that he sponsored legislation to make expanded testing for all newborns compulsory. Cruz took this action after seeing Hannah's condition.
The expanded screening checks five other rare lysosomal storage disorders along with Krabbe. Cruz on Monday said that Hannah has showed them what all she has been through and they pray for her family. As per sources, each screening costs almost $8, which could cost roughly $600,000 to the state yearly.
Experts said the Krabbe disease affects one in almost 100,000 infants. And if the disease is detected immediately, then the stem cell treatments formulated from blood in healthy umbilical cords could help to extend the baby's life
They further said that babies with this generic disorder appear to be healthy at the time of birth. But gradually within few months they start to show symptoms, like muscle stiffness and irritability.
And when the disease starts making progresses the patients often lose eyesight, suffer seizures, and stop eating.
Hannah's mother, Vicki Pizzulo, told Fox 29 in March that her daughter was born healthy, she was of 8-pound, 11-ounce little girl on Jan. 18, 2013.
Dr. David Wenger, neurology professor at Thomas Jefferson University Hospital, said, "Think of an electric wire without the coating. In this disorder, you lose the insulation around the nerve".
He said that in his 40 years of research on Krabbe, he was successful in developing the screening for Krabbe. Pizzulo and her husband said they'd never heard of such screening for Krabbe disease, and they were shocked to hear that a treatment for the condition existed.
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