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National Donate Life Month

Pictured: Legislator Stephanie Bontempi (at the podium) speaking at a press conference at the William Rogers Legislative Building on April 21st.

At a press conference held on April 21st, in recognition of National Donate Life Month and in anticipation of Blue and Green Day, Legislator Stephanie Bontempi (Centerport) met with colleagues, organ donors, recipients and advocates to encourage more people to consider becoming organ donors.  Blue and Green Day is a component of National Donate Life Month, and its role is to promote organ donation through inspiring stories of those whose lives were touched by it.

“We are probably at least somewhat accustomed to hearing stories about someone who received an organ transplant, but rarely do we meet the donors, who have often passed on.  For this very reason, much more attention needs to be placed on living donors – those who donate while still alive and healthy,” said Bontempi.

The speakers at the press conference made it clear that New York is lagging behind a good number of other states when it comes to the number of registered donors.  While it is unclear exactly why New Yorkers are not adding their names to the donor list, it has become the mission of organ donor advocates to turn the tide.

“While becoming a living organ donor is not for everybody, it would be wonderful if more people would at least consider becoming a donor upon their death.  Many of us have the potential to save at least one life, possibly more,” added Bontempi.

To learn more about becoming an organ donor, please visit: www.liveonNY.com.

Event will be held April 29 at 8:30 a.m. at Harborfields High School in Greenlawn

Hunter Cuthbertson, center, with his siblings while hospitalized for his bone marrow transplant in 2017. Photo from Cuthbertson family

Huntington residents are being asked to lace-up their sneakers for a 5K race aimed at raising awareness that April is National Donate Life Month.

Town of Huntington council members Joan Cergol (D) and Mark Cuthbertson (D) are co-sponsoring the first 5K Run to Save Lives April 29 at Harborfields High School along with Simply Fit Health and Wellness gym, which has locations in Centerport and Huntington. The event aims to raise awareness for the importance of organ and tissue donation, an issue that hits close to home for Cuthbertson.

The councilman’s son Hunter said he was surprised when blood tests came back  abnormal during his routine precollege physical in 2016. The younger Cuthbertson said further testing led him to be diagnosed with aplastic anemia, or bone marrow failure, an affliction causing his body to not produce enough blood cells.

“They said I could try to go back to school, but I would need a bone marrow transplant at some point,” he said.

“Nationally, 23 people die every day because they don’t receive an organ.”

– Christian Siems

Luckily for the councilman’s son, his younger brother was tested and wound up being a perfect match, despite just one-in-four odds. He underwent a week of chemotherapy before receiving his bone marrow transplant March 21, 2017.

“My treatment went really well,” the younger Cuthbertson said. “But it was really a perspective changing experience.”

He has since become a strong supporter of bone marrow donor drives, encouraging others to get tested to see if their tissue could be a potential match. Representatives from LiveOnNY, a nonprofit association dedicated to recovering organs and tissues for transplants in the New York metropolitan region, and Be the Match, a 501(c)(3) organization that matches patients with marrow donors, will both be at the April 29 event to encourage people to sign up.

“I think everyone who has the time to get their cheek swabbed, which takes 15 seconds, should do it,” he said. “Even if you are not the match or don’t have the time to do it today, a couple years down the road you might be the match to save someone’s life.”

Cuthbertson is one of the two individuals who will be recognized at the 5K race alongside Christian Siems, a 2012 Harborfields High School graduate. Siems said he considers himself one of the lucky ones. It was during one of the school’s annual blood drives that a nurse detected an issue with his heart.

“When she listened to my chest, she said, ‘You have a heart murmur,” but I hadn’t been diagnosed with a heart murmur; I got it checked out,” Siems said, indicating he later went for testing to St. Francis Hospital. “It was probably one of the scariest days of my life.”

Christian Siems. Photo from Michele Martines

Siems learned that his heart was starting to fail before age 21. He underwent surgery to have an internal defibrillator implanted and attempted to move forward with his plans to attend college.

But when Siems started feeling constantly tired, was pale, struggling to walk and even having difficulty talking, he was rushed to Huntington Hospital. Doctors had him airlifted via helicopter to cardiac specialists at Westchester Medical Center who informed him he would need a heart transplant.

“I was told I had to sit in the hospital and wait for a heart,” Siems said. “It could have been six months; it could have been a year.”

Doctors decided to risk performing an open-heart surgery to install an assistive device that would allow Siems to wait for his much-need transplant at home. He received a phone call after only six months that a donor was found. Siems celebrated the third anniversary of his successful heart transplant April 25.

“Nationally, 23 people die every day because they don’t receive an organ,” he said. “In New York, if you get too far out [on the list] a lot of times a doctor will tell you to move to another state to get an organ faster.”

New York state also has the third-lowest donor registration rate in the country, according to the Organ Procurement and Transplantation Network, a section of the U.S. Department of Health and Human Services.

“There’s no general knowledge about organ donation out there,” Siems said. “A lot of people don’t know what it is, there’s a lot of myths and misconceptions.”

He encouraged local residents to come to the event and learn more about signing up to become an organ donor. Race registration costs $25 for adults and $10 for students. All proceeds will go to LiveOnNY. Register online at www.LivingSimplyFit.com/5k.