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Hoboken family raising awareness of rare disease following daughter’s death

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“This is her sitting up in the boppy,” Stephanie and Matt Cohen said while showing PIX11 a photo.

Stephanie and Matt Cohen smile through the sadness when remembering their daughter, Madison.

“Madison was a very happy baby girl and we did our best to keep her comfortable,” Stephanie described.

They were first told there was a problem 20 weeks into the pregnancy.

“She was diagnosed with Hypoplastic Right Heart Syndrome, which is one of the congenital heart defects,” Stephanie said.

The very rare condition occurs when the chambers, valves and vessels are malformed, causing a lack of blood flow to the body.

“You don’t know how it happens, there’s no answer, and there’s no cure,” Matt explained.

Immediately after being born on June 17, 2016, Madison was taken to the Neonatal Intensive Care Unit. She went through open heart surgery and was on the transplant list. She never left, passing away less than three months later.

“They couldn't save her and they brought us out to say goodbye,” Matt remembered.gofundme

Through it all, the Cohens had unwavering support from family, friends and the Hoboken community. They raised more than $50,000 just through their GoFundMe page.

“Many different local businesses started fundraisers for Madison," Stephanie said. "The Hoboken mom community also stepped up big, they brought us meals I think every night for at least two months," Matt added.

Stephanie and Matt were humbled and wanted to keep their daughter’s memory alive by raising money and awareness through walks and fundraisers. They coined their team 'Madison Strong.'

“It means fighting every day and staying positive,” Matt smiled.

Now, Stephanie is hoping to reach more families, by being a ‘Heart Mom’ and ongoing contributor for Little Hoboken Blog, which offered tremendous help since day one.

“The truth is that could’ve been any of us so that’s why it was so important for us to rally around them,” Cassie Mascari. "We really just thought we should bring Stephanie on and she’s the perfect person to help us build this part of the business.”

Every day takes work but the Cohens feel blessed to have known Madison.

"Do you think you plan on trying to have children?" I asked. "Yeah we definitely want to have a family.”

Until then, they have something else keeping them happy!

“This is willow!" Stephanie beamed. "Petting a dog is some of the best therapy they say," Matt smiled.


Produced by: Kim Pestalozzi

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