Mayor Marc Laredo welcomed a group of organ donation advocates, transplant recipients, kidney donors, and elected officials to City Hall to speak about National Donate Life Month – and to urge people to register as organ donors.
The event was held in the Mayor’s Office in City Hall, enlivened by colorful, upbeat posters with positive messages about organ donation. Participants stood holding small paper hearts.
Matt Boger, Senior Director of Government Relations at New England Donor Services (NEDS) – a federally designated organization responsible for the identification and transplantation of organs and tissues – spoke enthusiastically about organ donation and introduced each speaker in turn.
The first transplant recipient to speak was Ward 8 City Councilor Stephen Farrell. “Eight years ago today, I received a phone call from Massachusetts General Hospital saying that they had a heart for me if I wanted it. I’d been waiting for three years,” Farrell said. Speaking to families who donate their loved one’s organs, he said, “All of us here who are recipients are incredibly grateful for your thoughtfulness and your love.”
Up next were brothers Rob and Larry Rubin – president and CEO of Bernie and Phyl’s Furniture (and sons of Bernie and Phyl).
Rob spoke about being on the wait list for two years to replace his failing kidneys. This past summer he developed autoimmune hepatitis and as a result needed both a kidney and a liver. He received both organs in September and is now six months post surgery. He also spoke of writing to the donor family to express his gratitude.
Boger then introduced Rob’s brother Larry, and gesturing towards the Mayor, described Larry as, “a Newton resident…and a voter!” The crowd chuckled.
“At 10 years old, I was diagnosed with polycystic kidney disease — an inherited disease. I’ve always known that one day I would need a kidney donor, and now that time has come,” Larry said. He spoke of wanting more time with his wife Brenda, their four children, and three grandchildren. “Today and every day is about gratitude,” he said, thanking donors and the families who “say ‘Yes’ in the hardest moments.”
Boger then acknowledged Phil Emmanuel, the owner of Little Luke’s Cafe in Newton Upper Falls, who received a kidney from a living donor, Seth Newman, a Newton resident and staff member at NEDS.
Lia Lawson – transplant recipient and NEDS volunteer — spoke about the liver transplant that saved her life when she was 11 years old.
A few days after telling her mother she had a stomachache, Lia was diagnosed with Wilson’s disease and was transported from Bridgeport to Yale New Haven Hospital via ambulance. Her family was told she only had days to live if they did not find a donor. No one in her immediate family was a match. Lia’s distant relative Bethany heard that the donor needed to be O+, which she was, and volunteered to be tested. In a few hours Bethany was told, “Congratulations, you’re a match! Surgery is tomorrow,” Lia said.
The surgery took place on Easter Sunday in 2008 — a date, Leah noted, “that represents new life.”
Fred Breimyer stepped forward to recount his story as a tissue recipient. Due to vasculitis, he was going blind and needed two corneas. Breimyer reflected on the three pillars that made his recovery possible: the medical community, the donor families, and NEDS itself, which he called “more than an administrator. It is also a support system.”
Speaking of donor families, he said, “It’s a chance for them to give. It’s not something that they would choose to do, but they are forced to confront the situation at a very difficult time in their lives as they are grieving a loss. At the same time, they are stepping forward to do something quite wonderful.”
“We don’t think of ourselves initially as being terribly fortunate, because each of us had a medical problem of the first order that threatened our lives,” he said. “[But we] are very, very fortunate.”
Stephen Averhart, a Family Services Manager at NEDS, stepped forward to speak about working with donor families. He said that only one or two in a hundred people pass away in a way that makes them eligible to be donors. Some people, he said, do not want to register, but they would still like to be donors. He urged those people to share that wish with their families.
Bolger spoke of a campaign that NEDS has launched with the Massachusetts Department of Public Health to increase the number of donors — and the social media campaign that will be launched with little cartoon heart and brain mascots.
Kate Fillo, Chief Clinical Officer at the Massachusetts Department of Public Health, spoke of the department’s work to expand transplantation services at Massachusetts hospitals and working with NEDS to defray some of the costs associated with transplants — such as transportation to and from hospitals and paying for medication.
State Representative Amy Mah Sangiolo presented NEDS with a formal citation from Newton’s State delegation and State Representative Tom Stanley. Colleen Ogilvie, Registrar of Motor Vehicles, talked about the RMV’s ongoing role as the state’s most significant registration point for potential organ donors.
The event ended with a commendation from the Mayor to NEDS. “A gold stamp! I love it!” exclaimed Bolger.
The Mayor then held up his driver’s license and encouraged people to “Put that heart on your license. Do it and you might save someone’s life.”
