Girl writes book inspired by her disease
Eleni Zoe Pournaras, 11, got finishing touches on ‘A Marshmallow Christmas’ done while in Sick Kids
Most kids in the hospital spend their time thinking about going home, but Eleni Zoe Pournaras spent her time in the Hospital for Sick Children putting the f co-authored and illustrated.
Eleni has hereditary hemorrhagic telangiectasia (HHT), a disorder in which blood vessels do not form properly. In Eleni’s case, her lungs do not function efficiently which results in low oxygen levels, something her family must constantly monitor.
However, 11-year-old Eleni lives her life to the fullest. She is a Sick Kids patient ambassador, sharing her story to raise awareness of her rare disorder and raise funds for the hospital. Eleni is also one of many such ambassadors at the hospital who drew and painted their appreciation for front-line healthcare workers.
Beyond that, she is now the co-author of “A Marshmallow Christmas” with Bessie Kripouris, her former daycare worker. Proceeds from the book will be donated to Sick Kids.
“I had to try and learn to draw cupcakes with disabilities,” Eleni said. “So there was one cupcake that had crutches, and there was another cupcake who was in a wheelchair.”
She began the book last year, before she landed in hospital in October for nearly a month after she lost excessive blood due to a wiggly tooth, a childhood rite of passage that usually isn’t serious. However, Eleni’s condition causes a high red-bloodcell count, making her more prone to chronic bleeding.
“It was like three more pages, and it was done,” Eleni said. “And then we got in the hospital, and so I couldn’t do it as much because I had, like, two IVs in my arm … I really wanted to finish that book.”
Fortunately, she was able to sign off on the final edits during her stay and “my husband and
Bessie went to go pick up the book from the printers the day she learned she was getting out of the hospital,” said Eleni’s mother, Demetra.
But before they could leave, they had to deal with a long lineup of doctors and nurses who wanted Eleni’s signature on the book — “I signed like 100 copies,” she said.
Eleni doesn’t just serve as an ambassador for Sick Kids, she a school would often ask about her health condition.
“It was kind of annoying because they kept asking,” she said. But Eleni, who gets around in a wheelchair, used it as an opportunity to educate people and to combat stigma facing people who are disabled.
“She tries to inform people … she’s a little doctor. When you ask her what her condition is, she could tell you,” her mother said.
Eleni said she couldn’t have completed the book without the support of Sick Kids staff working hard to keep her in good spirits. She fondly remembers Sabina, a child-life specialist who introduced her to bravery beads, which Eleni earned whenever she had a visitor or procedure. She’s collected roughly 400 so far.
For Eleni, one of the most satisfying aspects of being a published author is having the chance to collaborate with her former daycare provider.
“It was also Bessie’s dream to do a book and to be an author. So it was both our dreams come true.”