Butterfly legacy for Penny Doerge includes pajamas 

It was just over a year ago that 16-year-old Penelope Griggs Doerge, called “Penny” by her family and friends, died at home in Glen Cove, N.Y. of a common but exceedingly difficult genetic disorder, neurofibromatosis. The disorder causes tumors to grow on nerve pathways anywhere in the body. There is no cure.

In the year since her Nov. 10, 2022 death, there has been an outpouring of support for the family and the cause, both across the nation and in Boca Grande, where Penny spent so much of her childhood.

“Our roots are deep on the island,” said her mother, Kate Doerge. “And we are so grateful for all the support.”

Penny was the granddaughter of the late Frank Kernan and his wife, Cassie Kernan, both longtime residents. From the moment of her death, the family not only celebrated her life but began spreading awareness about her genetic condition, creating dozens of ways to raise money for research on how to prevent and treat it.

Last January, they formally launched Penny’s Flight Foundation. The Foundation’s board is composed of Penny’s father, Chad Doerge (Chair), Kate Doerge, (Vice Chair and President), Megan Grant (Secretary), and Scott Willard (Treasurer). Renowned physicians Kaleb Yohay, director of child neurology at NYU, David Harter, director of neurosurgery at NYU, and Roger Widmann, chief of pediatric orthopedics at the Hospital for Special Surgery, are medical advisors.

The Foundation’s mission is to make much-needed advances in medical research on neurofibromatosis and related disorders. Neurofibromatosis is the most common genetic birth condition in the U.S., with one out of every 2,500 children affected, but it had been completely ignored by the philanthropic establishment.

“It is underfunded because of the multiple ways and conditions it shows itself,” said Penny’s mother, Kate. “No one case is the same.” The symptoms can be completely different. In Penny’s case, it was diagnosed after a tumble off of her bed and injury to her tibia.

“With neurofibromatosis,” Kate said, “it is complicated because it can morph into a variety of conditions, or just one.”

Penny died at home in Glen Cove, N.Y., with her parents and brothers Henry and Frankie at her bedside. Since Penny’s death, her life has been celebrated across the media, including on CBS with Nora O’Donnell, and two appearances on the The Today Show.

“We have just had this incredible groundswell of support,” said Kate. “It really has been a movement, truly, as we say. There are mornings we are waking up and saying, ‘How is this happening?’ ”

Recently, the retailer J.McLaughlin became one more part of that groundswell, with the creation of a set of pajamas for Penny’s Flight. At a book signing and store event last month, Barbara McLaughlin unveiled the pajamas, which have butterflies on them, a motif that Penny loved. The overall slogan for the cause is, “Spread your wings, shine your light.”

There are still pajamas available at the J.McLaughlin store on Park Avenue. But they are not the only items.

Immediately, there were PD stickers and bracelets, helping to have the family feel like she was still there. Friends also held awareness events. The butterfly has become a motif for the cause, and fans of Penny continue the theme by sending them in, taped with dollar bills and small change.

“Every week sends a stuffed enveloped filled with cut-out butterflies,” said Kae. “It’s the weirdest thing, but the most incredible thing. We are unique in the sense that we are celebrating Penny’s life and doing something,” she said. So far, between donations and merchandise, they have raised over $3 million.

Penny was very much an outdoors person, and she lived life to the fullest, both skating up north and waterskiing and surfing here. 

“She loved Boca Grande,” said her mother. “It was our very happy place. She grew up going to The Gasparilla Inn and Pink Pony every afternoon.”

During the COVID pandemic, the family spent three-and-a-half months here, becoming locals. “So many people remember her on the island frequenting all the stores,” said Kate. “We would go fishing with Patrick McCafferty.”

After Penny died in November, they did not come back for Christmas.

But with the memory of Penny fresh in their minds, they returned last spring. “We went back for the month of March,” Kate said. 

“It was the best.”

Visit PennysFlight.org to donate or find merchandise. The pajamas are at J.McLauglin, at 941-855-9163.