(WBNG) - Frank and Joanne Calvey describe their son Matthew as one of a kind.
He was known for his great sense of humor with funny t-shirts, love of music, and never giving up.
Born with a diagnosis of Lowe Syndrome he made it through certin physical limitations, but always continued to live his life to the fullest.
"He was in and out of the hospital so much, but he just went along with it. I can't imagine how many times he was poked, had to be thousands and he always said nah I'll be fine and he always was," said Joanne.
One of those many times in the hospital was for a kidney transplant.
In the United States roughly 109,000 people are waiting for a lifesaving organ. Around 9,000 of those are in the state of New York. One person is added to that waiting list every 10 minutes.
Like Matthew more than 80% of those are waiting for a kidney.
Matthew's sister Kaeti donated one of her kidneys to him.
In 2020 5,700 lives were saved through the generosity of living donors. Three out of four are biologically related.
For a year and a half both Matthew and Kaeti recovered, but for Matthew it didn't last.
"It didn't work and nobody could tell you why it doesn't. All they can say is somethings going wrong and everybody's different," said Joanne
Matthew went of dialysis and waited.
"He had a lot of hope… that he was going to get better. That's what I mean by he was strong," said Frank.
In early December he was declared brain dead. That's when the Calvey family received a call from Adam Cox with Donate Life.
"When I called Mr. Calvey, I spoke to him late in the evening after he had made a very difficult decision and received some very difficult news about his son," said Cox.
The call, to ask the family about Matthew becoming an organ donor himself.
"I said you know he's on a lot of drugs because of his health, I don't think his liver is any good and he said oh no we did tests on it and his liver is really good," said Frank
"There are a lot of misconceptions that with certain health conditions or with age that you might not be eligible to save lives through donation," replied Cox, "A lot of families when we meet with them and talk with them don't realize that there is nothing major that would rule someone out right off the bat. We do a very comprehensive and thorough evaluation of each organ system of a medical and social history to ensure we don't miss anything."
Cox said another battle they face is getting people to register.
Nationally 95% of Americans are in favor of being a donor, but only 58% are registered. In Broome County that number is 55%.
"43 percent of all adults in New York State are registered to be organ donors back in 2012 that number was only 18 percent," said Cox
Despite this increase Cox said another wave of misinformation they are working to combat is fear over standard of care for those registered.
"The hospital does not have access to the state registry so unless they see the license with the organ donor on there, most of the time the hospital staff doesn't know if you are registered or not," said Cox, "The hospital provides the same standard of care to every individual regardless of donor designation."
For the Calvey's knowing Matthew would save someone else's life made the decision less difficult.
"I guess that's just the way our family is. It's not always about you, it's about other people too," said Joanne.
"Matthew's liver has gone to some young man who had it … before Christmas, so he got to celebrate a good Christmas," said Frank.
One organ donor can save up to eight lives, a tissue and eye donor can reach anywhere from 70 to 100 people.
"Only roughly two out of every 1000 deaths in the United States are eligible to be organ donors," said Cox, "So it's extremely rare somebody has the opportunity to save lives through donation. We give the family a very powerful decision to make and give them the opportunity to help save lives through donation."
"Some people don't realize the need for it unless it happens to you," said Joanne.
Cox said it is important families have conversations about their wishes regarding donation in the event someone is not officially registered.
As for the Calvey family, they hope to one day meet Matthew's organ recipient, but for now know his life lives on.
"Putting their own grief aside, putting their own heartbreak aside to still be heroic and to make matt a hero and save somebody else's life is truly tremendous."
To register as an organ donor through Donate Life click here. Or -
- When applying for or renewing a learner permit, driver license or non-driver ID at a NYSDMV office or online through your MyDMV account.
- Through the New York State of Health Official Health Plan Marketplace when applying for health insurance.
- When registering to vote - complete and sign page 3 of the voter registration form.
- When completing a paper enrollment form that can be found at donatelife.ny.gov