Heartbroken Family of Sick Toddler Takes Mission To Harrisburg - My9 New Jersey

Heartbroken Family of Sick Toddler Takes Mission To Harrisburg

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At a little more than one year old, it's easy to see this toddler's short life has had its challenges.

Hannah Rose seemed like a normal baby at first until her parents noticed she wasn't developing like other kids.

They were heartbroken to find out 14-month old Hannah has a rare genetic disease. Her parents don't want this to happen to another child and their mission has taken them to Harrisburg.

FOX 29's Sabina Kuriakose has their story.

"She was born January 18, 2013. A healthy, eight pound, eleven ounce baby. She was the biggest baby on the floor," recalled Levittown mom Vicki Pizzulo.

Vicki and her family were on cloud nine after welcoming little Hannah into their lives. But their happiness was short-lived when, at just four months old, Hannah was diagnosed with a devastating genetic disease.

"We were just so blessed. And she was perfect. Four months later she turned into a different baby," said Vicki.

Doctors told Vicki her daughter had Krabbe disease, a degenerative illness that affects the nervous system and stunts Hannah's development. Her beautiful smile is now only a memory for her mom.

"It's not fair. We haven't bottle fed her since four months, we haven't seen her laugh or smile. She should be walking around, she's not," Vicki told FOX 29.

Soon after Hannah's diagnosis, Vicki was told there is a test that can be done at birth to identify Krabbe disease in infants.

Vicki and her husband never knew about the screening, and were shocked to learn that there's treatment in the form of an umbilical-cord blood transplant, if the disorder is caught in time.

A 2005 study by the New England Journal of Medicine found the treatment worked well on children who received the transplant before they began to show symptoms of the disease. By the time Hanna was diagnosed, treatment was not an option.

"They said it's too late for her. The symptoms had already progressed," Vicki said.

Still reeling from the heartbreaking news, Vicki started the "Hope for Hannah" Facebook page to let other people know what was happening with Hannah. Within months, over 24,000 people started following her story online. Hannah's parents turned that support into action, and are pushing to make newborn testing for Krabbe mandatory.

"So many families are struggling, and they don't have to struggle when there are treatments out there. It's not a cure, but it's a treatment," explained Vicki.

In October the Pennsylvania House of Representatives voted to approve mandatory testing thanks to Vicki's efforts. Now it's up to the State Senate to vote on it.

But Vicki said she's frustrated, because she says she's not getting an answer on how long that will take.

Senate aides tell FOX 29 the bill is expected to be brought up by the Public Health and Welfare Committee to be voted on before the legislative session recesses this summer, but couldn't tell us when the Committee is expected to meet. Vicki believes every minute that goes by puts another child at risk.

"I can't stress enough--the first 3 weeks, it starts showing symptoms in the brain. That's why it's very important to have them tested," pleaded Vicki.

You can find the "Hope for Hannah" Facebook page here.

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