There's a sign that greets visitors on the front door of a home in the Farmbrook section of Levittown: "No crying, this is a happy home."
Yet it's hard to remain upbeat for Vicki Pizzullo these days. She broke down within minutes of a reporter's visit to discuss her daughter Hannah's health. At 6 months old, the baby has an incurable illness that has overwhelmed the family.
Videos of newborn Hannah wiggling about in her seat making multiple attempts to get her thumb in her mouth show a normal, healthy baby. But those simple movements became painful at 4 months old.
“She would start screaming when she would eat,” Pizzullo said, her voice cracking while choking back tears. “Everything just happened so fast.”
Hannah, who stopped eating because of the pain, would soon be diagnosed with a rare and fatal strain of leukodystrophy, also called Krabbe (pronounced Crab A) and Globoid Cell Leukodystrophy.
Krabbe is a genetic disorder that affects both the central and peripheral nervous systems, according towww.huntershope.org.
An important enzyme needed for the production of a protective covering for nerve cells known as myelin is lacking in Krabbe babies.
It is the deterioration of that covering that causes Hannah pain.
The journey for her and her family began in June.
Her father, Justin Ginion, and Pizzullo took Hannah to a hospital and were told Hannah had acid reflux and was dehydrated. She was sent home, according to Pizzullo.
“The blood work showed nothing wrong,” said Pizzullo.
“This is my third baby,” said Pizzullo. “I knew something was not right.”
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