Father walks 100 miles to help raise awareness for his daughter suffering from rare disease

Anthony DiChiara’s daughter, Penelope, suffers from a rare disease called Emmanuel Syndrome and requires special care.

Jon Dowding

Mar 9, 2024, 1:23 AM

Updated 72 days ago

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A Massapequa father wants people to take notice of his journey to walk 100 miles in his firefighter bunker gear for someone special in his life.
Anthony DiChiara’s daughter, Penelope, suffers from a rare disease called Emmanuel Syndrome and requires special care.
“She’s just the funniest, most lovable little kid,” he says.
The problem for DiChiara and his wife, Melissa, is they can't find proper after-school care for her.
"We'd sit there and we'd go like, 'How can we be the first people with this problem? We can't be the first people with this problem,’” said Melissa DiChiara.
To raise awareness about this problem that his family and many others face, he's walking 100 miles in his firefighter bunker gear.
"There's nothing I wouldn't do for my kids,” said Anthony. “I'm walking 100 miles for Penelope's needs, for the needs of children like Penelope, for the families like ours," he says.
DiChiara wrote a letter and drafted a petition to send to elected leaders so someone could get his daughter, and other children with special needs, the help they need.
"If this is what it takes to get the services for her, I'll walk 1,000 miles if that's what I needed to do,” he says.
Their family and friends joined them on their walk Friday evening at Berner Middle School to show the support he and Penelope have.
"I don't think you would see every husband out here walking 100 miles in firefighter bunker gear and just doing whatever he can think of to help his family,” said Melissa DiChiara.
Anthony DiChiara says he hopes someone will notice and offer to help.
"If it makes just one person, one person who has the influence and the resources to take notice, it's totally worth it," he says.
He has a letter and petition those interested in supporting can sign.
News 12's John Dowding joined him on his walk this evening. Anyone can join him as he finishes his walk Saturday and Sunday at Berner Middle School.


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