Family mourns son but yearns to make a difference

Baby Nolan’s parents mark first anniversary

Sean and Ailian Evans, who have dedicated themselves to raising awareness of congenital heart defects, pictured in front of their son Nolan’s picture on a wall that commemorates patients who have fought heart ailments, at the Cayman Islands Hospital.

Somehow, in the wake of unimaginable tragedy, Ailian and Sean Evans have found a way to move forward. Mr. and Mrs. Evans were the parents of Baby Nolan, who passed away last Jan. 25 after battling the effects of congenital heart defects, and it’s an ache that will always be present.

But it’s also one that has inspired in them a call to action. The Evans family is dedicated to both remembering Baby Nolan and to raising awareness of other children born with the same plight.

“It’s not easier,” said Mrs. Evans of the one-year anniversary of her son’s untimely passing. “Some days, I’m OK, but other days I’m not. There is no day that his name won’t be mentioned for me one way or another. Until this day, his nursery hasn’t been touched. It’s still intact, the way he left it.”

Mrs. Evans and her family have become relentless champions for Nolan’s memory, and they have worked tirelessly to raise awareness and funding to battle the scourge of congenital heart defects.

They stage two events every year in Nolan’s memory. The first one, the Heart Warriors and Angels Beach Walk, will be held on Feb. 10 at Seven Mile Beach. That event will be staged in conjunction with Team Cristiano, the family of Cristiano McKenzie, another local victim of pediatric heart disease.

The Evans family also holds an annual KidFest and Family Fun Day in honor of Nolan’s birthday in June. Last year, the event was held at Pedro St. James and aided the local community. The Evans family has raised more than $20,000 for Hart for Hearts and the Cayman Heart Fund over the last year.

It’s all in memory of Nolan, who lived to be seven months and three days and experienced a number of surgical procedures in order to repair his heart. For Mr. and Mrs. Evans and their children Ashlyn and Erin, it’s not enough to remember Nolan without doing something to benefit children like him.

“It means a lot to me. It’s priceless,” said Mrs. Evans of the support from the community. “I really wanted to thank my friends, family, volunteers, sponsors and just the community in general. They’ve been very supportive during all these events and during the past year. There has always been support.”

Mrs. Evans said that during Nolan’s treatment, she became an expert in medications and the many ways the heart can malfunction, and she said she now lives to provide solace to parents going through a similar crisis. Mrs. Evans calls herself a “Heart Mom,” and said it will be her mission to raise awareness about heart defects and the way families cope with them for the rest of her life.

“I was a parent. I went through it,” she said. “We have been there and we know how it feels. Sometimes, we don’t know how to explain to people. They say, ‘Oh, he will be fine.’ But they don’t know what it is and you can’t tell me he’ll be fine. It’s not that simple. It’s very complex. Sometimes people see the child, and maybe Nolan looked like he was going to be OK. But inside, his heart was not OK.”

The Heart Warriors and Angels Beach Walk will cost $25 to join, and all proceeds will be given to Hart For Hearts and the Cayman Heart Fund. The first 50 people registered will receive a gift bag, and prizes will be distributed to the best costumes for both children and adults. The event is timed to coincide with Congenital Heart Defect Awareness Week, which starts on Feb. 7.

For Mrs. Evans, there are so many people to be thankful for. There’s Sue Doak, Kerry Bennett-Reed and the nurses in the NICU units at the hospitals Baby Nolan was treated at, and Dr. Sripadh Upadhya at Health City who diagnosed Baby Nolan’s ailment. There’s also Dr. Earl Robinson and Dr. Linden Swan from the Health Services Authority, and Mrs. Evans wanted to single out Dr. Kristine Guleserian, a Florida-based specialist in cardiovascular surgery who was ever-present with kind words and support throughout the process.

“She’s very special to me, to our family,” said Mrs. Evans of Dr. Guleserian. “She cares about the patient and the family. That’s her priority.”

There’s even CINICO health insurance, which Mrs. Evans said fully covered treatment for Baby Nolan running into millions of dollars.

It was too much to confront alone, said Mrs. Evans, and the family will always be grateful to the people who stepped up in their moment of need.

Now, one year later, what would Baby Nolan be like if he had not been sick?

“He’d be happy and smiling and running,” Mrs. Evans said. “And perhaps calling me Mom.”

The Heart Warriors and Angels Beach Walk is meant to call to other families and create memories even as they share recollections of the dearly departed, and Mrs. Evans hopes to make it an annual event much like the KidFest and Family Fun Day.

Mrs. Evans said the family would go to Baby Nolan’s gravesite in June and release Chinese lanterns, but he’s with them every day in their thoughts and their hopes to make the world a better place. That is the eternal gift he’s given the world, and it’s the only way his parents know how to cope with his passing.

“It’s the way that I have to bring something positive out of the negative. But it still hurts very much. It’s like it happened yesterday,” Mrs. Evans said of Baby Nolan’s passing. “For a mom, it will never go away. That will be my baby forever. And there’s nobody and no place that can replace that emptiness.”