Relatives of about 60 people who this past year donated their organs, eyes or tissues for transplants after their death were presented with the New York State Medal of Honor Sunday afternoon. Many teared up when they saw their loved one’s faces splashed across the blue screen of a digital projector. Some of the donors died as recently as this summer. Some were as young as 5.
Those in attendance at the Sight Society of Northeastern New York’s annual Donor Memorial Service at The Desmond are still grappling with their loss. For many, knowing a part of their relative still lives in someone else brings comfort. That’s why Vicki Crosier chose to donate her son’s kidneys and corneas 32 years ago.
“That’s the only reason I did it,” said Crosier, a guest speaker at the memorial who also received a special award for her donor activism. “I wanted a part of him to live on.”
In 1980, her son, Kyle, was driving home from work when his car was rear-ended in front of the driveway of their Berne home. He was ejected from the car and died that day. He was 17.
Like many who received medals Sunday, Crosier hadn’t thought about organ donation until her son’s death. Today, she spends much of her time comforting families thrust into the same position she was three decades ago.
“For a lot of these families, this is the first time they’ve actually confronted this,” Crosier said. “They’ve cried, now they’re going to eat, then they’re going to go home. For many of them it’s the beginning of a new episode.”
About 10,000 people are on organ and tissue donation lists in New York, accounting for 10 percent of the national total, according to the Organ Procurement and Transplantation Network. There are 350 to 450 deceased donors in the state each year, according to the transplant network’s data. In 2011, there were 393.
The data does not include people waiting for cornea transplants, which would add several thousand more to the list, said Vicki Adler, executive director of the Sight Society of Northeastern New York.
Though she’s worked in organ donation most of her career, Adler was still not prepared for the news she received this July, when doctors told her that her 11-year-old daughter’s kidneys had failed.
“We took her to the doctor thinking she might have a stomach virus,” Adler said.
Her daughter immediately went on dialysis and is on a transplant list. Adler’s daughter can’t eat what she used to and has a hard time finding the energy for activities she normally enjoys, like taekwondo and cheerleading.
It pains Adler to think of people not donating because of what she says are misconceptions, like the idea of wealthy people paying their way to the top of the list or fears that doctors won’t give donors the same quality of care as other patients.
“Someone who is going to die without receiving a heart, lung or liver is being penalized,” Adler said.
The donation process affects the recipients as well. Many have a difficult time balancing the elation they feel over the gift they’ve received with the guilt of knowing where it came from.
Alyssa Demagistris got a cornea transplant just before her senior year of high school. In April 2004, doctors found a rare parasite in both her eyes. Steroids she took to treat the parasite caused an infection in her right cornea months later. Demagistris, then 17, received her transplant that August.
Demagistris, a stay-at-home mother who lives with her husband in Guilderland, doesn’t know much about her donor, including if the person was a man or woman. She wrote a letter to thank the donor’s family that she said was sent to an address in Virginia. Donors names are not released, even to the families of those who received the donation. All Demagistris knows is that the donor was around her age when he or she died. It’s a thought that weighs on her.
“It’s almost like a daily struggle, Demagistris said. “Thinking that I can see because someone my age isn’t alive. It’s a constant battle in my head.”
Sunday’s event with families of donors present was tough to take.
“Today was a rough day,” Demagistris said. “But it helps to see that this came from an actual person and a family that had a story, and to think that it went to a person who has a family and a story.”
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