SKANEATELES - While recipients of organ donations call them the gifts of life, some donors' families find the process is their lifeline as well.
For a decade after their son died, one Skaneateles family acted as advocates to encourage people to explore organ donation.
Ellen Kulik never considered donating an organ, until her son, Mark, died when he was 10 days old, but not before his heart was transplanted into a then 6-week-old boy from Florida.
In 1997, Kulik's uterus ruptured during labor with her second child. The doctors told Kulik and her husband the grim news that Mark's little brain was not functioning, and soon his body would shut down.
“As the doctor told us the news about Mark, it was just so shattering, I felt like I was just spiraling backwards down a long, dark tunnel and had nothing to hold on to,” Kulik said. “And then just by divine inspiration the words 'organ donation' came to me, because I thought if there was anything I could do to spare another family from this pain, that's what I wanted to do.”
Kulik, now a Skaneateles town councilor, worked for 11 years with the National Organ Donation Council. She wanted to spread the message of hope while helping others come to terms with what is a traumatic time.
“It was such a horrible time to know our son was going to die, the idea of organ donation gave us some hope. It gave something positive to come from Mark's death,” she said. “It was really like a lifeline to us.”
While she's not as active as she once was, the experience changed her life and she aims to remind people about the importance of donating organs and skin.
An upcoming event is one such way to raise awareness. Kulik is working with the Donor Family Network Links for Life golf tournament on June 7 in Marcellus. People can enter before May 21.
The event will include people touched by the process such as donors or their families, recipients, and doctors. One of the sponsors is Little Mark Inc, a nonprofit organization the Kuliks started as a crisis and bereavement group.
Events and hearing others' experiences help create an awareness of organ donation, so when traumatic experiences happen, people will remember that option.
In fact, most regrets Kulik hears are from people who wondered why doctors didn't approach them to talk about donating and let the opportunity slip away.
Besides donating organs to those with medical needs, some people give their bodies to medical study to allow better understanding of diseases and the human body.
Part of the raising awareness is to address the myths surrounding the process - myths Kulik admits she bought into earlier in her life. She never thought about giving bodily gifts until, like most people, she received her driver's license. She didn't sign the back of the card because she bought into those urban legends surrounding signing up as a organ donor. Among others, these include donors can't have open caskets - which for the most part isn't true, and doctors would not work to save the life of someone they knew was a donor.
Doctors are supposed to save lives so it makes no sense that they would let some people die to help others live, Kulik said. Most world religions accept the surgery, she added.
The statistics are a really compelling reason to explore giving organs, she said. One donor can save six lives and touch countless more.
However, despite if the back of a license is signed, medical personnel talk to families about the potential donor's intentions before they take any action, so Kulik stresses the need to discuss family members' desires.
Beyond saving a now 11-year-old's life, the Kulik's gift created an connection for life between the two families. Earlier this month, Kulik went to Florida to visit the family.
The gift is anonymous, but through a few anonymous correspondence, they were able to build and then maintain through the years, a relationship.
“It helped us get through a time that made absolutely no sense,” Kulik said.
If you go
WHAT: Donor Family Network Links for Life golf tournament
WHEN: 1:30 p.m. Saturday, June 7
WHERE: The Links at Sunset Ridge, Marcellus
REGISTER: Enter before Wednesday, May 21
INFORMATION: Call 673-9126 or 430-2677
COST: $75 individual, $300 for teams. $25 for dinner.
ATTRACTIONS: Besides the golfing, that includes greens fee, lunch, special raffles, and prize holes
Learn more
Sign up online in the New York State Organ and Tissue Donor Registry at http://www.health.state.ny.us/nysdoh/donor/index.htm.
Sign up in the New York State Organ and Tissue Donor Registry through the Department of Motor Vehicles when you apply for or renew your license or non-driver ID.
Always remember, it is important to tell your family members that you have decided to become a donor so they will understand your decision and support it.
Ellen Kulik never considered donating an organ, until her son, Mark, died when he was 10 days old, but not before his heart was transplanted into a then 6-week-old boy from Florida.
In 1997, Kulik's uterus ruptured during labor with her second child. The doctors told Kulik and her husband the grim news that Mark's little brain was not functioning, and soon his body would shut down.
“As the doctor told us the news about Mark, it was just so shattering, I felt like I was just spiraling backwards down a long, dark tunnel and had nothing to hold on to,” Kulik said. “And then just by divine inspiration the words 'organ donation' came to me, because I thought if there was anything I could do to spare another family from this pain, that's what I wanted to do.”
Kulik, now a Skaneateles town councilor, worked for 11 years with the National Organ Donation Council. She wanted to spread the message of hope while helping others come to terms with what is a traumatic time.
“It was such a horrible time to know our son was going to die, the idea of organ donation gave us some hope. It gave something positive to come from Mark's death,” she said. “It was really like a lifeline to us.”
While she's not as active as she once was, the experience changed her life and she aims to remind people about the importance of donating organs and skin.
An upcoming event is one such way to raise awareness. Kulik is working with the Donor Family Network Links for Life golf tournament on June 7 in Marcellus. People can enter before May 21.
The event will include people touched by the process such as donors or their families, recipients, and doctors. One of the sponsors is Little Mark Inc, a nonprofit organization the Kuliks started as a crisis and bereavement group.
Events and hearing others' experiences help create an awareness of organ donation, so when traumatic experiences happen, people will remember that option.
In fact, most regrets Kulik hears are from people who wondered why doctors didn't approach them to talk about donating and let the opportunity slip away.
Besides donating organs to those with medical needs, some people give their bodies to medical study to allow better understanding of diseases and the human body.
Part of the raising awareness is to address the myths surrounding the process - myths Kulik admits she bought into earlier in her life. She never thought about giving bodily gifts until, like most people, she received her driver's license. She didn't sign the back of the card because she bought into those urban legends surrounding signing up as a organ donor. Among others, these include donors can't have open caskets - which for the most part isn't true, and doctors would not work to save the life of someone they knew was a donor.
Doctors are supposed to save lives so it makes no sense that they would let some people die to help others live, Kulik said. Most world religions accept the surgery, she added.
The statistics are a really compelling reason to explore giving organs, she said. One donor can save six lives and touch countless more.
However, despite if the back of a license is signed, medical personnel talk to families about the potential donor's intentions before they take any action, so Kulik stresses the need to discuss family members' desires.
Beyond saving a now 11-year-old's life, the Kulik's gift created an connection for life between the two families. Earlier this month, Kulik went to Florida to visit the family.
The gift is anonymous, but through a few anonymous correspondence, they were able to build and then maintain through the years, a relationship.
“It helped us get through a time that made absolutely no sense,” Kulik said.
If you go
WHAT: Donor Family Network Links for Life golf tournament
WHEN: 1:30 p.m. Saturday, June 7
WHERE: The Links at Sunset Ridge, Marcellus
REGISTER: Enter before Wednesday, May 21
INFORMATION: Call 673-9126 or 430-2677
COST: $75 individual, $300 for teams. $25 for dinner.
ATTRACTIONS: Besides the golfing, that includes greens fee, lunch, special raffles, and prize holes
Learn more
Sign up online in the New York State Organ and Tissue Donor Registry at http://www.health.state.ny.us/nysdoh/donor/index.htm.
Sign up in the New York State Organ and Tissue Donor Registry through the Department of Motor Vehicles when you apply for or renew your license or non-driver ID.
Always remember, it is important to tell your family members that you have decided to become a donor so they will understand your decision and support it.
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