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Teen With Rare Disease Inspires Elmwood Park To Run For Awareness

Dee Dee Ingui, 16 of Elmwood Park, has Peutz-Jeghers Syndrome, a rare genetic disease. She is the inspiration behind the non-profit, Rare is Beautiful. Photo Credit: Rare is Beautiful Facebook Page
The Elmwood Park community will come together in April to support Rare is Beautiful, a non-profit inspired by Dee Dee Ingui, a local teen who is battling a rare disease. Photo Credit: Rare is Beautiful Facebook Page

ELMWOOD PARK, N.J. – A few years ago, Denise and Sal Ingui didn’t know the signs of Peutz-Jeghers Syndrome.

How would they?

After all, it is estimated that just one in every 300,000 people have the rare genetic disease.

Then in 2015, they learned their daughter Dee Dee was one of them.

The disease affects the gene that suppresses tumor growth and greatly increases the risk of cancer when patients aren’t monitored.

“It goes undiagnosed a lot. In my daughter’s case, we didn’t know until she had an episode where the polyp was so large it caused a blockage,” Denise Ingui told Daily Voice. “But there were definitely signs of it prior to that that we just weren’t aware of, and that a lot of people just aren’t aware of, including the doctors.”

One of those signs, Ingui said, was the freckling on Dee Dee’s lip.

“Apparently that is a big indicator that there is something brewing in your system, and all I was ever told was that they were cute little freckles,” she said.

Dee Dee, a 16-year-old student at Bergen Tech High School in Teterboro, is scheduled to get more polyps removed next month, her mom said.

Dee Dee’s battle has inspired the Ingui family in a big way.

They created Rare is Beautiful, a non-profit with a mission to spread awareness about Peutz-Jeghers Syndrome, financially assist families who have children already stricken with cancer, and ultimately, help find a cure.

Last year, the organization held a benefit dinner attended by more than 500 people, said Ingui, a secretary at 16th Avenue School in Elmwood Park. This year, they wanted to do something more “kid-friendly,” she said.

“Especially working in the school, the kids are always asking what they can do,” she said.

The family decided to hold a 5K Run/Walk and Family Fun Day. The event is set for Sunday, April 2, at Elmwood Park High School.

To spread awareness about the event, students from Elmwood Park Memorial High School jumped on a viral internet sensation and created a mannequin challenge save-the-date video.

To sign up for the event, visit (Keyword: Rare is Beautiful). See the attachment below for more information.

See Attachment

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