Fund established in honor of Watertown 'superhero'

[okarol]

Fund established in honor of Watertown 'superhero'
BY BILL BITTAR
Republican-American of WaterburyFebruary 23, 2014

WATERTOWN, CONN. — Every Wednesday, Eric Steele walked into the Legends Superheros comic book shop in Middlebury to stock up on issues of "X-Men," "Green Lantern" and his favorite, "Spiderman." To those who knew him, Steele, 30, was a superhero unto himself.

From enduring three kidney transplants as a baby to battling cancer as an adult, he faced every challenge with a smile and a steely resolve.

But three new kidneys were not enough. Steele needed a fourth kidney transplant and his mother, Christine Rutigliano, was a match. But three bouts with non-Hodgkins lymphoma and calciphylaxis, a rare but severe dermatologic condition in which painful sores break out all over the body, held up the surgery. On Feb. 7, Steele's heart gave out and he died in his sleep.

While giving his nephew's eulogy, Jack Rutigliano said, "Although Eric faced medical complications at every turn, his resilience and ability to continually bounce back never ceased to amaze us. He became invincible — that of true 'superhero' status!"

"His strength was an inspiration," said Darcy Bollard of Waterbury, a neighbor and close family friend. "He didn't give up. He was a little fighter."

Even in death, Steele continues the fight against calciphylaxis. He allowed Dr. Sagar Nigwekar of Massachusetts General Hospital in Boston to establish the Eric Steele Research Fund to raise money for research and treatment of the disease. Nigwekar is using blood and tissue samples from Steele as part of his research.

Bollard said Steele told her, "If I had to go through this and I'm able to help doctors learn something to help someone else, then it would all be worth it."

On a recent afternoon, Christine Rutigliano and Bollard sat around a table in the Watertown condo of Christine's parents — and Eric's grandparents — Frank and Ann Rutigliano to talk about Eric's life and the goals of the foundation.

Frank Rutigliano said his family wants to channel money into the fund so his grandson can leave a legacy to help others with calciphylaxis.

The Republican-American told the story of Steele's successful kidney transplant in 1985. When the organ started to fail 20 years later, Steele had to go for dialysis three times a week.

Christine Rutigliano said medications to prevent rejection of the transplanted kidney caused her son's bouts with cancer later in life, and the dialysis led to his contracting calciphylaxis. She remembers reading that 50 percent of calciphylaxis patients don't live for a year, because the sores can lead to infections.

"The problem with calciphylaxis is it's so rare that doctors don't know how to treat it properly," Christine Rutigliano said. "Because I was so frustrated, my brother Jack found a kidney doctor in Boston, at Mass General."

That doctor was Nigwekar, and the family met with him, a dermatologist and two burn surgeons in September of 2013. By November, a plan of action was in place. Nigwekar made changes to Steele's dialysis and the burn surgeons performed skin grafts, allowing the sores to heal.

"He was on the road to healing," Christine Rutigliano said. "He had less pain. We had an all clear for him. His wounds were under control."

Bollard said the doctors at Mass General gave Steele hope when there was none.

Eric Steele endured close to 30 operations in his lifetime and always looked forward to his grandmother's peas and meatballs when he got home. Christine said her son loved being with his family most of all, celebrating the holidays and playing games on Pizza Night at his aunt, Linda Fruin's home.

"He amazed me with his strength," Christine Rutigliano said. "I don't know if I could have endured half of what he did. He always smiled. He always made me smile."

Donations can be made to the Eric Steele Research Fund at Massachusetts General Hospital, 55 Fruit St., GRB 1008, Boston, MA 02114.

Information from: Republican-American, http://www.rep-am.com

Read more here: http://www.thestate.com/2014/02/23/3279892/fund-established-in-honor-of-watertown.html#storylink=cpy