Medical issues never defined Penny Doerge’s short life | Herald Community Newspapers

The Sunday School of St. John’s Episcopal Church of Lattingtown hosts an annual Easter Egg Hunt for residents of the Glen Gardens of the Glen Cove Housing Authority. Children hide candy-filled plastic eggs on Mason Drive, behind bushes and trees.

Last year, Penny Doerge saw an opportunity to do more. She created what Courtney Callahan called an art installation when she placed her plastic eggs and a stuffed rabbit in the crevices of an unsightly 4ft crumbling brick pillar.

“For Penny, that brick was like a canvas,” said Callahan, director of children’s ministry and outreach at St. John’s. “The most amazing thing was that Penny felt the cracks were full of beauty. The wall that was collapsing wasn’t like – that’s how public housing is. Penny didn’t see it from that way.

Penny, a 16-year-old from Glen Cove described as a beauty inside and out, died on November 10. The cause was brain cancer.

A few lines from an Ariana Dancu poem were shared at Penny’s celebration of life in St. John’s on November 18, which was attended by around 1,000 people. Alix Smith, 16, said it impersonated her friend Pen. He said, “She made the broken look beautiful and the strong look invincible. She walked with the universe on her shoulders and made it look like a pair of wings.

“She was the cutest,” says Alix, “but that’s not what made her Pen. It was made up of much harder things.

Penny was diagnosed with Nuerofibromatosis, or NF, when she was four months old after falling out of bed. His fractured tibia was not healing, leading his parents, Chad and Kate, to take him to the Special Surgery Hospital, where the fracture was determined to be a symptom of NF, a rare disease that presents differently in affected individuals. Penny’s main symptom was pseudarthrosis – a bone disorder.

“Ever since Penny was a little girl, with her big bright eyes, kind smile and bouncy curls, we knew she was very special,” Kate said at the memorial. “After Penny’s first operation, she crawled commando in her hot pink body thrown across the room with a big smile and the determination of a little warrior we would watch for so many years to come.”

Surgeons fused his shin bone and put a rod next to it, allowing him to play sports. But Penny was still wearing the brace as a preventative, dazzling her.

And while the possibility of other NF symptoms has hovered her entire life, her medical issues have never defined her, Chad said.

“Since the early days, Kate and I have never let this become Penny’s focus,” Chad explained. “At first it was our choice as parents, but as she grew up Penny took that attitude one step further.”

Penny was stoic about her medical issues, which she rarely spoke about. Chad said she never complained and was never sad or angry about what she had to go through.

“When it was time to go for surgery or see doctors, she handled it with a clinical ‘go for it’ attitude, like taking care of a business meeting before moving on to things that she was looking forward to doing,” Chad said.

Penny was always busy living her life. She was a talented artist, fashionista, world traveler and social media influencer who loved TikTokking with friends, paddle boarding and dancing. She had an infectious laugh and loved to prank her brothers, Frankie, 12, and Henry, 18.

When the coronavirus pandemic hit, Penny and her friends, Lilly Grant and Ellie Myles decided to start a camp. Glam Camp, a summer program for young girls, was a safe place for children during a dangerous time, Kate said, because it included the same group of children, whose parents were all friends.

The camp, which had themes, such as movie star day and fashion show day, rotated between the three girls’ houses where everyone was tested for Covid each day before enjoying the many activities that had been planned . Glam Camp was for girls ages 5-8 the first two summers but then the boys wanted to go too. Thus, the third summer, the camp, renamed Adventure Camp, was reserved for girls and boys.

Penny loved to paint and her art was very important to her, Kate said. Her paintings were beautiful, but creativity was also part of who she was.

“She had an incredible eye for color and the way she dressed, she had her own creative style,” Kate said. “She was always doing her artwork, creating videos, TikTokks. Someone said Penny was an actress and the world was her stage. She was joy personified.

Penny had an innate form of stoicism about her medical issues, which she rarely talked about. Chad said it made sense that many people, even those close to his daughter, didn’t understand what she was up against.

The Reverend Mark Fitzhugh, Rector of St. John’s, attributes Penny’s ability to enjoy life to the fullest to her parents.

“As a parent and a person of faith, what was so inspiring to me was how Chad and Kate instilled a zest for her in the midst of the struggle in her body,” Fitzhugh said. “Penny was and will continue to be a shining light to her friends and family.”

Penny attended Green Vale School, Glen Head, from kindergarten until graduation in 2020, then enrolled at Portledge School in Locust Valley.

Green Vale School Principal Dr Jesse Dougherty said he will always remember Penny as an always positive person. When there was negativity around her, she would walk away, he said. And although college wasn’t easy for her, Penny never gave up.

“She was a grinder and very hard working,” he said. “The combination of courage, hard work and happiness led to his academic success. It was the consensus of the whole school to give her the Buckley award when she graduated.

The Buckley Award for Effort and Achievement, one of the most prestigious awards given at Green Vale’s graduation, is given to a student or students who “show consistent effort and achievement in their studies”.

Dougherty said her memories of Penny will always be of someone who was friendly to everyone and had a magnetism about her. “Everyone wanted to be with her,” he said.

Chad’s parents, Carl and Meredith, of Locust Valley, have always been and remain in awe of their granddaughter’s tenacity.

“She was a little angel and she was full of beans,” Carl said. “She was fun and happy. Penny taught us a lot – older and younger. When things aren’t right, you say OK, let’s deal with it.

Carl still remembers the time he went to a sporting event Penny attended. “She didn’t care if she could win or not,” he said. “She never said I couldn’t do anything. She was a gift from God. And she taught us how to treat others.

Penny was diagnosed with glioblastoma multiforme in 2020. An aggressive form of brain cancer, it is a symptom of nuerofibromatosis. Penny underwent the first of seven surgeries in early 2020 to remove the tumor from her brain. She also underwent chemotherapy and radiation therapy. His last operation dates back to August 2022.

“We never stopped thinking what if,” Kate said. “We lived every day to the fullest and led a normal life.”

Penny trick or treated on Halloween but the next day she was sold out. She was getting worse.

“When Penny returned from Memorial Sloan Kettering on November 3 with news from doctors that nothing more could be done, the community, friends and family stepped up. For eight days they stood ready to help Penny and the entire Doerge family.

“We had this amazing support,” Chad said. “Everyone settled in our house like a cocoon of love. There was so much love in this house and around Penny. People wanted to sing to her, play guitar, read to her, and laugh with her.

Penny never complained. “A doctor told me that in his entire career he had never seen a patient so brave and resilient in all treatments or someone who was going to turn around so well so quickly,” Chad said.

At the memorial, Alix Smith said she believes everyone’s job is to live like Penny, avoiding social drama and fights.

Kate said she will always miss the joy Penny brought to their entire home, her love of life and her laughter.

A foundation is being set up by the Doerges in Penny’s name. In the meantime, the family suggests that support be given to the Hospital for Special Surgery – Lerner Children’s Pavilion at HSS.edu/pediatric-giving.asp or Advanced Neurofibromatosis Research-Children’s Tumor Foundation at CTF.org.

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