Many of us don’t appreciate our health until we catch a cold or the flu, or have to undergo surgery. Coleen Spinello is reminded of her good health every day, while her stepdaughter, Serena, suffers from combined immunodeficiency disease, a rare disorder characterized by a drastically weakened immune system.
“Here I am with great health, and she can’t partake in so many things because of her illness, and it’s frustrating because there’s nothing we can do to help,” said Spinello, who is married to Glen Cove Mayor Reginald Spinello. “If there’s anything I could do, I would give it to her.”
Spinello is no stranger to helping others. She donates blood regularly, is a Nassau County court-appointed special advocate, a co-founder of Glen Cove’s Bully Proof Project and an active volunteer in the city and school district, and she recently signed up to become a living organ donor, which changed her life — just not in the way she had expected.
In May 2015, Spinello heard that the 9-year-old daughter of Glen Cove Industrial Development Agency attorney Milan Tyler needed a kidney. Mia Tyler, who was adopted from Guatemala, was suffering from renal failure.
A few weeks before her diagnosis, Mia had been feeling tired. Her family thought she might have Lyme disease, as do both of her parents. A blood test revealed elevated protein levels, often a sign of kidney disease.
The Tylers raced from their home in Westchester to New York-Presbyterian Hospital’s emergency room. Mia had become so weak that she could not lift her legs.
Further testing determined that Mia’s kidneys were a quarter of the size they should be and covered in scar tissue. The doctors were amazed that she had made it to age 9. She was immediately put on dialysis, and the family was given donor application forms to hand out to relatives and friends.
When Spinello heard of Mia’s situation, she thought it was a sign. She had not yet been called on as a living donor, so maybe this would be her chance. She filled out the donor form and faxed it to the hospital. After a few weeks without hearing anything, she assumed the hospital had chosen another donor.
But then she got a call from a woman at the hospital, who asked whether Spinello was still interested in being a donor. She was, and gladly shared the required medical information.
A few more weeks went by, and Spinello thought she might had been eliminated from consideration. But then there was another call: Was she willing to undergo blood work? Spinello sent the hospital 12 vials of blood.
A few weeks later, she was told that she was No. 3 on the list. She answered more questions, took more tests, gave more blood. She also saw a psychologist to ensure that, after a process that had taken six months, she was mentally and emotionally prepared to donate.
The donor chosen is kept secret from the family in need until the hospital is sure it has a match. When the Tylers found out that Spinello would be the donor, they were shocked, having assumed that a relative would be the best match. But they went ahead with the surgery.
On Oct. 20, 2015, Spinello lay on an operating table at New York-Presbyterian, and Mia lay on another table in the nearby children’s hospital. After Spinello’s kidney was surgically removed, it was rushed across the street to Mia.
After one complication and several doses of steroids, Mia’s body accepted the kidney, and the surgery was deemed successful.
Since the surgery, she has been hospitalized about 10 times, continues to have bloodwork done, drinks more than two liters of water per day and takes daily medication. While she will never be completely out of the woods, she is alive.
In the past year, she has grown five inches and gained 19 pounds, and is back in school. She is living a relatively normal 11-year-old’s life.
A few months after the surgery, Spinello attended Mia’s ballet recital with her family. As soon as Mia stepped onto the stage, Spinello and Kimberly Carey, Mia’s mother, began to cry. “I was so excited she was feeling better to get back to her regular routine,” Spinello said. “It was so touching. It really was very emotional.”
Both families believe their lives have been changed by the experience. “I think Coleen saved Mia’s life,” Milan Tyler said. “She did this out of the goodness of her heart and the kindness of her soul.”
“My life has changed, because now she’s part of my life,” Spinello said. “You become almost family.”
As for Mia, “Life’s looking up,” she said, and she encourages others to donate organs. “I would say give it a try, ’cause kids out there who need it will be thankful and happy.”
To learn more about becoming a Living Donor, go to www.organdonor.gov. To register to become an organ donor on your driver’s license or identification card, and for more information about living donations in New York state, go to www.health.ny.gov/professionals/patients/donation/organ/.