By Kevin Redding
It was a parental nightmare. Immediately following the birth of their twins in 2016, Allon and Lauren Theilen of Smithtown were told by doctors that their daughter’s leg was broken and it had no chance of healing. An hour later, they learned that amputation would be in little Evelyn’s future.
“It was devastating,” Allon Theilen said.
His wife, Lauren, who experienced no difficulties during pregnancy, said it was the hardest thing in the world to hear.
Through testing and meetings with multiple orthopedists, the couple found out Evelyn suffers from a condition called pseudoarthrosis of the tibia, which is caused by a rare genetic, cancer-related disease known as neurofibromatosis Type 1, or NF1, which occurs in one of every 3,000 to 4,000 people worldwide, according to the National Institutes of Health.
Evelyn’s bone fragility was among NF1’s rarest symptoms. The disease has been aggressive, eating away at her leg bone. So far, Evelyn has had a broken tibia, a broken fibula and her legs are no longer equal in length.
The Theilens have sought treatment options that would allow their daughter to keep her leg, setting them on a journey across the state, and then the country.
“Most doctors we met would offer a surgery but with a very bleak outlook,” her father said. “Every time you do the surgery, you lose more leg bone. Most failed surgeries meant amputation.”
Lauren Theilen said it was sometimes difficult to even find somebody who was aware of their daughter’s medical condition at all.
Extensive research led them to the Paley Institute in West Palm Beach, Florida, a limb-saving and deformity-correction practice started by Dr. Dror Paley, whom Allon Theilen calls “the miracle man.” After several trips from New York to Florida and meeting with Paley, a challenging surgery that involves a bone graft taken from both sides of her hips and a hollowing of her two leg bones in an attempt to fuse the leg was scheduled.
“Sitting in a waiting room full of parents in the same position spoke volumes to us,” Evelyn’s mother said. “I’m hopeful now, but also terrified.”
On Feb. 8, Evelyn, now a 14-month-old described by her parents as “feisty, happy, playful and out-of-this-world intelligent,” underwent the surgery. The final results won’t be known for another six weeks. The Theilens said the best outcome would be that her bone fully mends and she’ll need to wear a brace until she’s about age 18 to help stretch her damaged leg to equal length with the other. Alternatively, the bone won’t heal, the graft and tibia won’t fuse, her ankle becomes deformed and other abnormalities may occur.
“I think this is the most trying year we’ll ever have to go through,” Lauren Theilen said. “People always say, ‘Look at you guys. You’re so strong.’ To me, it kind of feels like we’re just going day-by-day, doing what we have to do. There are days when he falls apart and I have to pick up, and vice-versa. We kind of take turns being strong and being there for each other.”
Allon Theilen set up a GoFundMe campaign Feb. 3, asking for a total $25,000 to help cover some of Evelyn’s medical costs. The family has exhausted their life savings on “medical expenses, flights and hotels,” and his wife has been forced to put her job on hold. Even after health care insurance, the surgery costs about $10,000.
In 18 days, the page has raised $18,906 from family, friends and generous strangers.
“That really blew me away,” said Allon’s sister, Andrea Morris, a Huntington resident. “I was overwhelmed by how many people came together for them.”
Evelyn’s father said despite what happens, he and his wife will never give up.
“We’ve dealt with a lot and keep our feet planted to the ground,” he said. “It sounds nonhumbling to say we’re very strong but that’s what everyone tells us, so we kind of have to believe them.”
The Theilen family’s GoFundMe page can be found at www.gofundme.com/evelyn039s-battle-with-nf1.