Elysa Maurer Duncan and her family and friends are looking for a miracle. A third miracle, in fact, in her short but remarkable life.
Duncan was diagnosed shortly after her sixth birthday with Wilms’ tumor, a rare cancer primarily affecting children. After two years of conventional treatment, involving chemotherapy and radiation at Roswell Park Cancer Institute and Buffalo Children’s Hospital, doctors told her family “they had nothing more for me” when the cancer returned, Duncan recalled recently in a phone conversation from her Lockport home.
Undaunted, Duncan’s mother, Anne Maurer, found Dr. Stanislaw Burzynski, who offered specialized, but alternative, cancer treatment at the Burzynski Clinic in Houston. He had founded his clinic in 1976. Maurer said the Roswell staff was supportive of her family's decision.
“It’s called antineoplaston therapy and it still isn’t approved by the U.S. Food and Drug Administration,” Duncan said.
Duncan recalled that she received the treatment for six months at the Burzynski Clinic before she was declared “in remission.”
That remission lasted 21 years.
And, in those ensuing 21 years, Duncan led a normal life, attended Lockport schools then college, enjoyed a career with People Inc., fell in love, married Nate Duncan, and against all odds once again, gave birth 15 months ago to Lillian Anne – miracle number two.
But Duncan, now 28, said she learned last August the cancer had returned after a trip to the emergency room for abdominal pain.
“I only have one kidney and it was enlarged,” she said. “I had two surgeries in November at Strong Memorial Hospital in Rochester to repair my kidney and remove the tumor and a couple of weeks later, an emergency surgery. I got out of the hospital in mid-December. I went back to Houston in January and Dr. Burzynski said he would take me back again as a patient.
“I have the same diagnosis as I did when I was six,” Duncan said. “I’m also being seen by a pediatric oncologist at Roswell, because this is a childhood cancer and it’s rare to have it come back this late in life.”
The Houston treatment costs $17,000 per month and is not covered by insurance.
Duncan’s family and friends are holding a benefit for her, called “Miracles for Elysa,” from 3 to 9 p.m. Saturday at the South Lockport Fire Co., 5666 S. Transit Road, Lockport.
Admission to the fundraiser is $25 and includes food, drinks, basket auction, 50/50 and live entertainment.
Duncan’s aunt, Laura Maurer Forton, recently recalled holding Elysa’s first fundraiser, almost 21 years earlier to the day at the very same fire hall.
“The community really came together that day 21 years ago,” Forton said. “It really grabs you.
“Alysa’s parents were told when she was little and had to go through chemo and radiation that she might not even go through puberty and would never conceive and have a child and now she’s the mother of a 15-month-old,” Forton said. “It’s unbelievable. It’s a miracle and now we’re looking for a third miracle.”
Duncan’s mother, Anne Maurer, said she had a vision of Dr. Burzynski’s ability to help her daughter when she was a child long ago.
“But if it hadn’t been for the people in the community who stood behind us, it would have been just a dream and this (remission) never would have happened,” Maurer said. “There has been so much love in this community and it’s been the people who have made this happen.”
“We decided just five weeks ago to have this fundraiser and we’ve gotten amazing support,” Forton said. “People are so generous. We’ll have a basket auction with probably about 150 baskets, and a big ticket raffle, too, with a trip on the Moondance catamaran as well as two signed Sabres’ jerseys – Jack Eichel and Ryan O’Reilly – and three 200-level Sabres tickets and gift cards to nearby restaurants.
“We’ll also have a separate raffle for a $1,000 flat screen television or $500 cash and those tickets are $5 each and will be available at the event or by contacting us,” Forton added. “The drawing will be June 9 for that raffle and we’ll sell tickets until June for that.”
In the meantime, Duncan is hoping Dr. Burzynski will be able to help her in adulthood like he once did when she was a child.
The Houston clinic, she said, attracts patients from “all over the world.”
Duncan is currently on medical leave from her job with People, Inc., where she has worked for nearly nine years.
“I have a degree from UB in health and human services and started working for People, Inc., at the end of my first year of college,” she recalled. “I absolutely love it. I am a program director for the after-school respite program for children and teens with developmental disabilities, ages five to 21. We have seven programs throughout Erie and Niagara counties.”
For more information on Saturday’s event, visit Facebook @MiraclesforElysa or contact Laura Maurer Forton at 570-3679 or firstname.lastname@example.org; Debbie Mauer at email@example.com or 628-5557; Erica Mullet at firstname.lastname@example.org or 807-5704; or Julia Fullington at email@example.com or 998-2884.
Basket donations will be accepted right up until the event.
Monetary donations, with checks payable to “Miracles for Elysa,” are also being accepted by Forton at 328 Middlesex Road, Buffalo, NY 14216; or at PayPal at firstname.lastname@example.org, care of Laura Forton; or Venmo@miraclesforelysa, care of Laura Forton.