Fortney: A 20-year battle, sparked by E. coli, ends

After fighting for life, she died on own terms

By Valerie Fortney
Calgary Herald
October 29, 2010

You sometimes hear of young people who are wise beyond their years. But in the case of Alisha Lewis, it is an irrefutable fact. 

This past June, she spent her final week on Earth paying a matter-of-fact visit to a funeral home to pick out a casket, choosing the white lilies that would rest atop it, and setting aside the hoodie and sweatpants she'd wear as mourners said their last goodbyes. 

But, then, the pretty 22-year-old didn't have much say when it came to the speed with which she was required to grow up. Before she was barely out of diapers, the world began testing her strength, courage and endurance in ways that many of us will never have to face. 

"She was the bravest person I've ever known," says her mom, Andrea Lewis. "She always told us, 'A life lived in fear is a life only half lived.' " 

It was abject fear that coursed through her mother's veins in early June 1990 when she raced to the Alberta Children's Hospital, her sick twin toddlers crying in their baby seats. The week before, she had stopped at a fast-food drive-thru and picked up fries and a cheeseburger, which she split in two and handed to her daughters in response to their pleading. 

"The kids had already eaten, but they really wanted the burger," Lewis says Thursday as we sit in her southeast home, turning the pages of a memory album filled with photographs of her smiling daughter. 

After being diagnosed with what was then called "hamburger disease" -- referred to today as E. coli infection-- Alisha and Aimee Lewis became little celebrities in the city. 

The Herald ran stories and photos of their plight, and they were featured on several TV news broadcasts, mainly because the girls were said to have possibly contracted the disease from the fast-food establishment, although the Calgary medical examiner at that time expressed concern that the contamination might have occurred outside of the disease's normal incubation period. 

Quickly, though, they slipped from the public eye. But the struggle had only just begun. 

While Aimee quickly recovered, Alisha continued to suffer, and later went into complete renal, or kidney, failure. 

When she was finally released from hospital six agonizing weeks later, her mother was told she'd suffered permanent kidney damage and might need a kidney transplant. "They first told me both of them might not make it," recalls Lewis, who not long after the crisis married her partner, Roger McLaren, who with their mom raised her two girls and boys, along with his two boys from a previous relationship. 

Despite some challenges, both girls appeared to thrive in their childhood and pre-adolescent years. "It seemed like it was all behind us," says Lewis. "Then she hit 13, and she was diagnosed with diabetes." 

Still, Alisha strived for a normal childhood, going snowboarding, shopping and hanging with her siblings and their friends. "It didn't matter how sick she was, she was always happy," says Aimee, who's enrolled in the pharmaceutical technician program at the Southern Alberta Institute of Technology. "We had a lot of fun together." 

But more trouble was on the way. Alisha later developed diabetic and autonomic neuropathy -- a nerve disorder that can cause intense pain -- and also had to have a feeding tube installed to keep nutrients in her body after being diagnosed with gastroparesis, a condition that affects the ability of the stomach to empty its contents. 

The most incredible aspect of her story, though, wasn't the blow after blow of medical complications and pain, but what, in the end, Alisha decided to do about it. 

Knowing all of her young life that she wasn't likely to live to see age 25, Alisha made the difficult decision at the end of 2009 to end treatment. "She was sick of hospitals," says Lewis, "and she was sick and tired of always being sick and tired." Alisha gave up the painful tube feed, and began eating food again, although she often wasn't strong enough to keep it in. 

Her family and friends, of course, fought valiantly to persuade her to continue the multiple interventions that keep her alive. "She had made up her mind," says her mother, "and some people had a hard time, even judged her, for that. But she was damned if she did, damned if she didn't." 

Lewis took time off work those last few months to be at her daughter's side, even taking her and other family members on a final spring trip to Mexico when Alisha was still strong enough for the journey. 

On June 8, 2010 -- almost 20 years to the exact day of her contracting E. coli-- Alisha died surrounded by her family, and cradled in the arms of her younger, by 12 minutes, twin sister. Thanks to accelerated osteoporosis and other life-threatening ailments, she was, says her mother, a young woman with the body of an 80-year-old. 

The two-year-old made locally famous by a tragic run-in with infected food grew into a young woman with the wisdom and knowledge of one much older: living life the best way she knew how in a situation with few choices, and dying on her own terms. 

Valerie Fortney is a columnist for the Calgary Herald. 

vfortney@calgaryherald.com

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