By Nadine Morsi
Organ donation has had a significant impact on my life in more ways than one. In 1994, my father received a liver transplant from a deceased donor. At that time, I was just shy of 20 years old and never came across anyone who needed a transplant, nor did I fully comprehend what it meant to be an organ donor. The idea of him receiving an organ that would later go on to extend his life was both fascinating and terrifying. My father’s life was extended by a few more years and would have likely been extended for a great many more had his cancer not aggressively consumed his body. Little did I know at that time, that I would be faced with the same battle 19 years later with my young, vibrant 5-year-old daughter at the very same hospital, Mount Sinai.
My daughter, Kinsey, was an active and healthy child with no significant medical history. In late December 2013, she suddenly became extremely ill and was soon diagnosed with end stage renal failure. Literally overnight, I went from a single parent raising a child with no medical concerns to managing a child with a life-threatening medical condition requiring emergency dialysis treatment. Meanwhile Kinsey had to process and adjust to a new life filled with uncertainty, fear, multiple medications, surgeries and medical procedures, lengthy hospitalizations, daily injections, severe dietary restrictions, overwhelming fatigue and chronic pain. And on top of it all, she had to rely on a machine to filter her blood three times a week.
Doctors told us the best form of treatment was a kidney transplant. The clock was ticking. Never have I felt so desperate and defeated in my life. The only thing that gave me hope was the possibility I could give her one of my kidneys, but medical testing unfortunately showed I was unable to be her donor.
Kinsey was then formally placed on the transplant waiting list while the search for an alternate living donor began. We knew the wait could be long, especially in New York where there is a shortage of organ donors. Out of sheer desperation, I began a social media campaign begging the public to consider being her donor. Friends from near and far began sharing her Facebook page and flooding social media. It wasn’t long before the media took notice and shared our story. More than 200 donors volunteered to be tested to see if they were a match. I have never felt so humbled and overwhelmed by love and support from total strangers.
In April 2014, just four months after her diagnosis, I received the best news of my life. A kindhearted living donor who wanted to remain anonymous was matched to Kinsey and was cleared to donate his kidney. Her donor came forward out of the pure goodness of his heart and offered her a new lease on life. In our darkest of times, her hero saved us and turned our dreams into reality.
On May 27, 2014, one week after her 6th birthday, Kinsey received the best birthday gift. Hand in hand, both Kinsey and her donor faced the surgery with big smiles, courage and conviction. The surgery was a success and both recovered beautifully without complications.
Soon Kinsey was discharged from the hospital and sent home to complete her recovery. A few weeks later, she was back to her old self. She was able to eat normally, run, gain weight, attend school, and she was finally free of her dialysis machine. I may have given birth to Kinsey, but her donor is the reason she continues to live her life to the fullest till this day.
Since her transplant, Kinsey has become a tireless advocate for organ donation, appearing in several campaigns and a PSA commercial with Governor Cuomo. She has participated in speaking engagements, lobbied elected officials in Albany and signed New Yorkers up as organ donors. In November 2017, we published a children’s book entitled “Kinsey’s Kidney Adventure” which chronicles her roller coaster journey from her initial diagnosis to her recovery. We wrote this book to raise awareness about organ donation and help other kids who have been affected by it.
None of this would be possible without Kinsey’s selfless organ donor and her incredible medical team. The greatest form of love is in our ability to give to others. Mothers do this every moment of every day as they care for their children. Kinsey’s donor showed an amazing capacity to love and sacrifice in giving her his kidney and saving her life. Kinsey’s second chance is a Mother’s Day gift for which I will always be thankful.
Today, there are nearly 9,500 New Yorkers on the transplant waiting list. Knowing my daughter not too long ago was waiting alongside them, propels me to advocate as much as I can in their honor. Oftentimes, we are not moved to action unless someone we know is directly impacted by organ donation. I hope my daughter’s story inspires others to take action and register as a lifesaving organ donor.
