There are only two posts on Michael Andrade’s blog on the social-media site Tumblr. But those two say it all.
The first one was written last October. When the 22-year-old accounting student at York University turned on his computer at home in Brampton, Ont. (northwest of Toronto), all other options had failed him.
“Considering what I am asking for, and where I am posting this,” he wrote, “I do realize this may be a long shot, but I must try everything I can.”
At the top of the lengthy post was a grainy photograph of his mother holding him on her lap when he was just a little boy.
“That woman in the picture above has loved me like no other mother can. She’s the strongest, most unselfish person I know, and has made so many sacrifices so that her four children can live a great, great life. I just can’t begin to describe what she has done for her family, and she will never take any credit or reward for it. This is why I am resorting to every possible way I can, including Tumblr, to get my message across.”
Ten years ago, Lucia (Lucy) Andrade, who is now 61, was diagnosed with primary biliary cirrhosis, a rare, incurable liver disease that predominantly affects women over 40. Doctors told her it probably could be controlled with drugs, and initially it was. But a little more than two years ago, her condition took a turn for the worse. Without a transplant within two years, doctors said, she would probably die.
“Somehow, I had hope,” she says.
She was put on an organ-donor waiting list. The hospital gave her a beeper that she kept by her side 24 hours a day for six months. If a deceased donor was found, the beeper would alert Lucy, who would then have to race to the operating room.
In the meantime, relatives were tested to see if they could be living donors. Most were not a match for Ms. Andrade’s rare blood type, O negative. One cousin was told his liver was too small. But Lucy’s only daughter, Lisa, did share her blood type. A week after her wedding last August, Lisa underwent several days of tests. Finally, though, the 34-year-old schoolteacher was told she could not donate because her liver-enzyme levels were too high. “It was the most horrible day of my life,” she says.
No relative or friend proved to be a suitable match. The beeper remained silent. Weeks dragged on, and Lucy’s condition grew visibly worse. Her two years were almost up. “I was just skin and bones,” she says.
Michael, the youngest of her four children, decided they needed to cast a wider net. “I knew I had to put people in my situation, in our situation, and explain what my mom was going through – what she meant to the family, what she needed.”
His first move was to write a post on Facebook. But he needed something everyone could see. He had never heard of Tumblr until he had taken an online-marketing course the year before, which discussed how effectively the site could spread messages and ideas as they were “reblogged” from one of its 54 million users’ pages to another and another. So he created a page called liverdonor4mom.
Under the headline “Please help us find a liver donor,” he described the symptoms and pain she was enduring: “Just now as I’m [posting]this she was mumbling to herself, ‘Why me? Why me? I’ve never been a bad person.’ It’s so heartbreaking to hear your mom say that.”
Lucy Andrade, a bookkeeper by profession, had always put family first, Michael says. When her husband Terencio’s half-brother had moved to Canada with his wife and six children, the Andrades had taken them in to their house for six months, never complaining about having so many people under one roof built for a family of four.
Michael still remembers his mother driving him to every baseball game and tournament he played in from 1996 through to 2009. “It didn’t matter what she had planned,” he says, “she was always at my games, cheering me on.”
In the Tumblr post, he also laid out what the testing process would require, and asked readers to share the post with others, in the hope of finding a suitable match in the Toronto area.
“I’m just really worried, and I don’t want to lose my mother, especially without me trying everything I can do to save her. She’s done so much for me, the least I can do is spread the word and try to find a donor for her,” he wrote.
Hundreds of readers spread the word, reblogging it on their own sites and posting it across social-networking platforms. Blue Jays catcher J.P. Arencibia posted about the Andrades’ situation on Twitter. Canadian singer Lights posted it on her own Tumblr site. The more people who saw the story, the greater the chances Michael could save his mother.
A new resource, but with a double edge
Anyone who has been on an organ-donation waiting list, or had a friend or family member on one, knows how terrible the wait can be. In a report released in February, the Canadian Institute for Health Information noted that both living and deceased donor rates have stagnated since 2006. In 2010, the last year for which data are available, there were 1,022 organ donors, an increase of just five from 2006. There were 2,103 transplant procedures, a mere 29 more than four years earlier.
“Whenever we have people who are dying who would otherwise benefit from a transplant, there’s obviously a very strong need to do more,” says Tom Blydt-Hansen, president of the Canadian Society of Transplantation. “If we had a sufficient supply of organs, these people need not die.”
On some level, we all know that. But there are still far more people on waiting lists than there are available donors. In 2010, there were 551 people on wait lists to receive a liver transplant; 74 of them died waiting. The realities are just as stark for people waiting to receive other organs.
Which helps to explain why patients and their loved ones are turning to social media. After she was diagnosed with advanced idiopathic pulmonary fibrosis last October, Hélène Campbell, a 21-year-old from Ottawa, became the unofficial face of organ transplants in Canada through her website and blog chronicling her experience.
Her online advocacy drew the attention of figures such as Justin Bieber and Ellen DeGeneres.
Ms. Campbell underwent double-lung transplant surgery in April. But she found her donor through the usual waiting list, not online, where she simply raised funds and awareness. What Michael Andrade did is a little different. Dr. Blydt-Hansen says there is some ethical uneasiness about people using blogs, Facebook or Twitter to find donors for themselves or their loved ones. It could change the landscape in ways that are hard to anticipate.
Generally, the main restriction on patients seeking donors is that they may not offer financial compensation. But there are other ways to gain a competitive advantage – with a compelling story, for instance, or a photo gallery that would break your heart.
Not everyone in need has the online access and know-how to go that route. As well, the organ-transplant waiting list does not play favourites by appearance, gender, ethnicity or economic status, but would-be altruists reading a web page might.
“We know that there are a lot of biases that then go into who offers an organ to which person,” Dr. Blydt-Hansen says. “We try to avoid all of those biases and at least try and make the system as fair as possible.”
But he is quick to add: “I’m the last person to tell somebody, ‘Don’t go find a donor for your loved one.’”
A digital prayer is answered
No one was able to help Graeme McNaughton’s loved one. Five years ago, Mr. McNaughton lost his cousin, Angela Cooper, to ovarian cancer. She was just 16. “We always got along really well,” he says, though they had mostly hung out only at family gatherings, as he lived in Belwood, Ont. and Ms. Cooper in London, Ont.
“I remember at the time they were looking for organ donors for her and nothing came through, and there was nothing I could do,” says Mr. McNaughton, who is now 23 and entering his third year in journalism at Toronto's Humber College. “After that I just sort of told myself, if an opportunity came up and I felt I was ready and I was in a position in my life to do something [to help someone else] then I think I would want to do something.”
One night last fall, Mr. McNaughton was on Reddit, a popular news-and-links tracking site, and spotted a link to Michael Andrade’s Tumblr page. He was touched by the story and e-mailed to say he would be willing to be tested. It turned out he was a match.
“That’s when I really sat down and examined everything,” he says. “I was absolutely terrified. But sometimes the pros do outweigh the cons. Lucy’s life was at stake, and that whole family would be affected by it as well.”
His own parents were “nervous and scared of what I was doing, but knew the reasons why I was doing it,” he says. On the day of the surgery, the doctor spoke with his mother to explain the procedure and the risks involved. “He told her there was a 0.3 per cent chance that I wouldn’t make it through the surgery. She misheard him and thought he said 30 per cent. I didn’t hear the end of that for a while.”
On Nov. 28, less than one month after Michael’s first blog post, transplant surgeons at Toronto General Hospital removed about 65 per cent of Mr. McNaughton’s liver to graft to Lucy’s ailing one (his would eventually grow back to its full size).
On that day, the Andrades did not know who the anonymous donor was. They figured it must be a family member. “Why would a complete stranger who doesn’t know us want to donate?” Lisa says.
Mr. McNaughton hadn’t wanted to complicate life for the Andrades. “I put myself as anonymous just so that the family could focus on Lucy,” he says.
But after a bit of sleuthing at the hospital – Lisa says there are some nosy aunts in the family – the family managed to find out the name of the donor and match it to e-mails Michael had received. “We were totally blown away,” Lisa says. “It restores your faith in humanity.”
Mr. McNaughton spent a total of six days in the hospital. Lucy Andrade was home in a little more than a week. It wasn’t until February, feeling stronger, that she finally met her benefactor.
“Say you have a new girlfriend and you’re going to meet the parents for the first time,” Mr. McNaughton says. “It’s like that, but a hundred times more intense.”
Lucy was shocked how young Mr. McNaughton was. She would not have expected someone that age to give such a gift to a complete stranger. But all that was secondary. Her husband’s first words to the young man were, “Thank you for saving my wife.”
Of course, the biggest surprise of all was how Mr. McNaughton had entered their lives. Lucy had never expected her son’s experiment with social media to save her life. She had chalked it up as more for Michael’s benefit: “He needed to do something for me, so okay, go ahead.”
Lucy is doing well, although she is still so tired most of time she can’t go out and work in her garden, as she loves to do this time of year. Her liver-enzyme levels are high, but are being lowered through medication. Both are normal effects and are being monitored by doctors.
As for Mr. McNaughton, his only lingering effects from the surgery are also expected ones – some numbness around the incision area, because doctors had to cut through some nerves.
Lucy may not be able to garden, but she is well enough to be taken out for a Mother’s Day dinner with her family on Sunday evening. A picture of the family taken at Lisa’s wedding last summer now hangs above the couch in the Andrades’ home.
“We were never ones to call each other, to hang out with each other,” Lisa says. “But ever since the testing process, we all keep in touch now. It’s really nice. I’m sure that, for my mother, is all she wants for Mother’s Day.”
Words of gratitude
On the day Lucy emerged from liver transplant surgery, Michael went in to a small room at the hospital reserved for family members and cried. When he had regained his composure, he turned on his computer and wrote his blog’s second post. He began with the headline, “Miracles do happen. :’)”
He let everyone know that his mother’s procedure had been successful. He thanked staff at Toronto General, where the operation was performed.
And he thanked the (then still-anonymous) donor: “This message can’t possibly be enough to express how truly thankful and appreciative we are of what you’ve done for us. I could write until my fingers fell off, and I still wouldn’t be thanking you enough.”
He thanked those who had spread the word too and ended by summing up what everyone had done for him and his family – they had given him his mom back.
“She’ll be able to watch me graduate, she’ll be able to travel the world, she’ll be able to enjoy her life again to its fullest, I’ll have a mother to walk me down the aisle when I get married some day, she’ll be able to enjoy time with the people she loves and the people who love her again. … “When my mom fully recovers from this, the sky will be the limit for her. All thanks to you. Thank you. Miracles do happen. Love, Michael Andrade.”
Dave McGinn is a Globe and Mail feature writer.
Editor’s note: Graeme McNaughton grew up in Belwood, Ont. Incorrect information appeared in an earlier version of this story.Report Typo/Error