A Brainerd woman who already endured the loss of two children to a rare muscular disease, now faces her own prognosis - being told she only has a few months to live.
Bill and Margo Fortune embraced on the couch Thursday in the living room of their Brainerd home, with their dog Paige on their laps, and shared their story.
"It is obviously a very deep story of life, family and possibly death. But it is a story of hope and strength," Bill said.
The Fortunes first talked with the Dispatch in 2013 about their children Emma and Corey, who both died when they were age 7. Emma and Corey fought with a mitochondrial disease and an undiagnosed neuromuscular disease all their lives.
The family is a big supporter of the Muscular Dystrophy Association (MDA), an organization helping children and adults with muscular diseases. In 2013, Emma was hoping to stand beside Brainerd firefighters for their Fill the Boot campaign, which raises money for the MDA, but she never made it. She died in March of 2013. Her brother died in 2009.
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Right before Emma's death, Margo was diagnosed with brain cancer. Her first tumor was removed March 20, 2013. Four days later, her daughter Emma lost her battle with her rare muscular disease. Margo also was told she has the rare muscular disease.
Margo had her second brain surgery in August of 2014. Her third and final surgery was done Jan. 20. Her doctor told her she only had a few months to live.
"After the third time, the doctor said he can't do it again," Bill said. "The tumor just kept on getting bigger, bigger than a golf ball ... We've learned a lot through this and it is what is. We've expected this to happen.
"My wife and I are still looking and hoping for a miracle. It is a daily fight not only for Margo's life, but the worry for her and my children, making appointments, paying bills. Still, together we fight and hope for something to work out that she will somehow be with us for years instead of months."
Margo, who has been feeling "OK" said, "I will fight to the very end for my kids."
"We are holding onto the time we have and hope the months turn into years," Bill said. "We are open to any experiments the doctors may have ... because look at what our options are. We are digging for a miracle. We believe in miracles."
As emotional as life has been for the Fortunes, they knew they had to sit down with their children and figure out what they want to do if the "brain cancer wins." Margo has five remaining children and four still live in the family home along with Bill Fortune's son. All the children agreed to continue living with Bill.
"I've watched them all grow up," Bill said. "We all sat down to figure out everything because I want things to be done how Margo wants them done. She was not my first wife, but she is my last wife."
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The Fortunes are treasuring each day as they don't know when Margo's last day will be. Margo hopes to take a family trip.
"I've always wanted to go to Wisconsin Dells," Margo said.
Bill said with a smile, "Well we can't go in January unless you want to go down an icy slide."
The Fortunes now are waiting to see what the doctors say. The doctors could recommend radiation, but at this time they don't know what their next step is.
When interviewed in 2013, Margo told the Dispatch the MDA and the Fill the Boot campaign would forever be a part of her life.
She said, "I promised my kids that when they died that I would always let people know about their disease and the MDA."
Brainerd Fire Capt. Kurt Doree, chairman of the Fill The Boot campaign for the past few years, met the Fortunes and their daughter Emma in 2012.
"This is the sad part of what Muscular Dystrophy does to children and adults," Doree said of the loss of Emma and now Margo Fortune's prognosis. "This is the part we normally don't see. We typically find out later that someone passed away. The families sometimes will send a card or stop in to let us know. It's always nice to meet the families."
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On behalf of the Brainerd Fire Department, Doree said, "Our thoughts and prayers go out to the family. The news of Margo's prognosis saddens us. Margo has a big heart. She always was positive even with all the tragedy she has been through, with her children."
Representatives from the MDA were at the Brainerd Fire Hall Thursday doing a lock-in fundraising event. Melissa Gerardy, MDA administrative assistant, said the fundraising events are the fun side of the MDA's work.
"People living with muscular diseases - is a daily struggle," said Gerardy. "The hardest part is losing a child."
The MDA is the world's leading nonprofit health organization sponsoring research seeking the causes of and effective treatments for neuromuscular diseases. The MDA research grants currently are supporting more than 250 projects worldwide.
JENNIFER STOCKINGER may be reached at jennifer.stockinger@brainerddispatch.com or 855-5851. Follow on Twitter at www.twitter.com/jennewsgirl .
