Thursday, June 09, 2011

Grit, selflessness CF victim Julia Lyons' legacy

There is a Facebook page devoted to Julia's memory at

By Laura Cudworth The Beacon-Herald Stratford, ON, Canada

Julia Lyons may have been born with cystic fibrosis but she was also born with the rarest kind of courage.

It was the kind of mettle and determination she had to maintain her entire life to face the nasty genetic disease and the extraordinary measures it would take to survive, including two double lung transplants. It's for her bravery and selflessness that she will be remembered.

Julia died June 1. She was 27 years old.

A celebration of her life will be held at the bandshell at Upper Queen's Park on June 18 at 11 a.m. It will be an open event and families are encouraged to bring a picnic lunch. Her family is requesting no one wear a suit or dark clothes.

Julia was four months old when she was diagnosed with cystic fibrosis -- an relentless disease that causes mucus buildup in the lungs and digestive system, effectively destroying them. She fought for her life every day.

She was just 14 when she had her first double lung transplant at Toronto General Hospital. The procedure was rare then, particularly on children. The hospital had completed just five of the operations between 1990 and 1994.

She braved another double lung transplant five years later. As the second set of lungs started to fail, she hoped to have a third, virtually unheard of, but her body was breaking down and it became impossible.

"There's no way she would have survived," said her dad, David Lyons.

Mom Gail expressed hope for a miracle, and her younger sister Emily just wanted Julia to get better. Julia sent them both an e-mail telling them there wasn't going to be a third transplant. An excerpt from that e-mail demonstrates how thankful she was and completely void of self pity.

"i HAD my miracle. and not only once, but twice! i was so so lucky that i not only had one but two chances to be relatively healthy for a good period of time each time. . . ."

"i had 10 YEARS that i previously wouldn't of had without those two gifts and i wouldn't of had all the memories we were able to create in that time. and there's no reason why we can't continue to create memories now. its just things are a little more difficult in doing them, thats all."

Julia kept diaries and journals, and Emily has been reading them now. One is a list of things Julia liked about herself. No. 1 was being a great sister to Emily and younger brother Christian.

Emily remembers her sister's sense of humor and sense of mischief when she was well. One of Emily's high school boyfriends got the brunt of it when he fell asleep on the couch and the girls gave him a new look with magic markers -- twice.

"She took care of me since we were kids. Any problem I had she would fix it," Emily said.

"She was a real firecracker too. She had to be sick to be soft spoken."

After the transplants, especially the second one, Julia's life was regimented by the three pages worth of medications she had to take, including anti-rejection drugs.

"Her whole life has been cystic fibrosis and she just accepted it," her dad said. "She lived her whole life under the pall that she might die anytime."

What her family still marvels at is her concern for others, including her dad, who had a back injury, even during her final days.

"She would be sick and in pain. She had shots for pain, patches for pain and she'd always be thinking of someone else," her dad said.

The severity of her illness forced Julia to grow up a little faster than her peers and she became devoted to understanding her illness and the drugs she was taking.

When she died her hands were covered in notes she'd written about her medications. Her dad said she was directing the show.

"She was far stronger than I was," he said.

In January, she got what began as a sinus infection, but her small body had had enough and her liver, spleen and pancreas were dying.

"The only thing that could have saved her was to take her head and put it on another body," David said.

But she had cheated death before. Julia's heart stopped during the second transplant and she'd had several other very close calls. She had always pulled through.

"A day before she died she was planning to go home. I think that's why everybody is so devastated, because she pulled herself out so many times," said her aunt, Ann LaSalle.

One of the gifts Julia received with her first set of lungs was the chance to go to Paris. She couldn't travel in recent years. However, her friend Anita Smidts will travel around the world and will take Julia's ashes with her and scatter them from each place.

LaSalle calls Julia her inspiration. "We will miss her terribly. She certainly is one for the history books. I've been nursing for 30 years and I've never seen anyone like her."

There is a Facebook page devoted to Julia's memory at

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