THE GODFREY BROTHERS
Mark Godfrey Gary Godfrey
Greenbush Family Using Social Media to Find Organ Donors
By Caroline Connolly WABI TV5 News, Bangor, Maine May 20, 2012
Greenbush - More than 100,000 people are waiting for life saving organ transplants across the country, according to the New England Organ Bank (NEOB).
Unfortunately, many won't live long enough to get one. NEOB statistics show that on average, 17 people die every day waiting for that call.
That's why a family in Greenbush has taken matters into their own hands and tapped into the world of social media to find an organ donor.
"Alport syndrome...ultimately deteriorates your kidneys and creates holes in them and they just don't function as well as a normal person," said Mark Godfrey.
He and his brother Garry were born with the disease.
"Even at the age of 9, 10, 11 we were always told that one, we would never have kids, two, that they would fail at a very early age," said Mark.
Until about six years ago, Mark, who is now 26, and Garry, 27, had proven doctors wrong, each even starting their own families.
"Once you hit that age you're like, I've passed this point, now what's next," said Mark.
Then Garry got sick.
"It's had its ups and downs. The dialysis is the worst part of it," said Garry.
He went on the national transplant list in order to get a kidney about two years ago.
"I don't want to have to see my kids watch me go through this," said Garry.
Mark joined him there more recently, and now they spend their days in and out of treatments, waiting for a call, while their mom, Lisa Dillen, spends hers hoping for a message.
"I say if it's the last thing I do, I'm going to get my kids a kidney," said Dillen.
About two years ago, she got tired of relying on the national donor network to come through for her boys, and took to a social one on Facebook to find them kidneys on her own.
"The first thing I wake up in the morning, I have my diet coke and I'm on that computer. The last thing I do at night is write something on my boys' pages to get out there," said Dillen.
She made two pages, one for Garry and one for Mark.
"They all started liking it and they all started passing it around. Garry's page just went wild and when Mark started I said hey, I'm going to try one for Mark," said Dillen.
It's resulted in connections all over the world.
"I mean I live in Maine. I live in this little town in Maine and my page is in England. It's in Argentina, it's everywhere," said Dillen.
Some contact her agreeing to be tested for a potential match, others just send kind words.
"I think the biggest thing is the sharing, the support, the caring," said Dillen.
The pages have introduced the family to a whole online community of patients seeking donors.
"What's she's doing is great, and you know she shares everybody's page that she sees no matter if they're in Arkansas, or if they're across seas," said Garry.
None of the contacts Dillen has made have turned into donors yet, but she feels a 'like' or 'share' on Facebook has put her one click closer to saving her family along with her friends online.
"I mean Alport Syndrome is not very common. So, nobody knew. Now everybody knows what it is and that's a good thing. Not only for my boys, but for other people," said Dillen.
If you would like to get in touch with Dillen and her sons, you can visit their Facebook pages at here and here.
If you are blood type A or O and would like to be tested to see if you are a match for either brother, please contact the Maine Transplant Program:
Maine Transplant Program
Ask for Mary. Tell the center you would like to be tested to see if you are a match for either Garry or Mark Godfrey.