Only a wish away

Two decades on, A Wish Come True continues vital mission

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A small and unassuming gray house on Warwick Avenue is where magic is made and wishes are granted.

Missy, the 9-year-old wish dog, makes frequent appearances here with Mary-Kate O’Leary, the executive director of A Wish Come True.

Halloween decorations, still in their packages, will soon transform the fenced-in yard. On Oct. 25 from 4-7 p.m., the War-Witches of Warwick (Mary-Kate and her Girl Friday, Nicole White) will welcome wish kids to the Wicked Wishes haunted house. Costumes are a must, and a professional photographer will be on hand as each family has a turn exploring the yard while the witches control the flow of traffic.

On Oct. 8, A Wish Come True celebrated its 38th year of granting wishes to children in Rhode Island facing life-threatening illnesses. Since 1982, over 1,600 children with once-hoped-for wishes have become the recipients of once-in-a-lifetime experiences.

While the most requested wish is a trip to Disney World, for one 17-year-old girl, it was a shopping day in New York City. COVID-19 has put a pause on travel, but Mary-Kate and her staff continue to perform their magic. A ramp was built for a young girl in Coventry to maneuver her wheelchair to her back yard. A 3-year-old’s dream of a playground set came true. And one day, a 5-year-old who boy hoped for a French bulldog named Oreo met his new best friend.

Mary-Kate says her heart is full at the end of each day. Her work has brought healing for the first time in her life after losing her 7-year-old brother to leukemia when she was 11 years old.

Raised by a police officer father and a mother who was a nurse, she says, “Giving back was what I knew.” However, she found her own way to follow that path – working with at-risk kids.

Armed with a bachelor’s degree in criminal justice and a master’s degree in psychology, Mary-Kate brings over 25 years of experience to the field. “I’m putting down roots!” With her love for her work, every day she honors the memory of her late brother.

Mary-Kate has a book in the works (title to be determined), a story for siblings of a critically ill child. She well knows the challenges, not only for the child, but those the entire family faces. “The siblings are impacted, and the parents struggle day to day.”

Life was different when Mary-Kate’s brother passed away. “Life-threatening childhood illnesses claimed the lives of 50 to 60 percent of children. But that is not the case today, with medical advances and technology. Life-threatening illnesses can be managed,” she says.

Just as in those days, there is no real break for parents of seriously ill children. After A Wish Come True presents a family with a trip to Disney World, meeting a celebrity, or embarking on a shopping spree, eventually the children and their families return to reality.

“It felt very transactional to set up a wish,” Mary-Kate admitted. She yearned to ask the parents, “What do you really need? One parent must leave work to care for the sick child.” The illness takes an emotional toll on the entire family.

Wishes and resources

Mary-Kate was struck with the idea of not only wishes, but resources as well, for the parents of the wish kids.

Through the Megan Duffy Foundation hardship fund, emergency monies are set aside for families’ electric bills, car repairs, groceries, furniture, and even basic household necessities. “We can’t have them come home to an unsafe home,” she explains.

The newest component of addressing resources is the Be Well program for parents. Partnering with Raffa Yoga and Urban Sweat, A Wish Come True offers a six-week term consisting of weekly classes, which include yoga and the holistic healing art of massage. The program is rounded out with a health coach from Integrated Health Solutions, a nutritional component, and opportunities for sharing in a small group. Mary-Kate notes, “The women like the structure added to their schedule.”

One Be Well mother writes: “I met some amazing people who understood what it was like to take care of a medically fragile child. I learned to not dwell on what happened in the past when my son fell ill.” She adds: “I can help manage my stress and get my emotions out. And when I’m finished crying, I get right back up and tell myself, ‘I am safe. I am OK. I got this.’”

Madison’s mom, Kim, relates: “The pandemic has been challenging for everyone, but I felt that I was barely surviving before … I was really struggling. I know that I am at the beginning of my journey in dealing with anxiety and stress but this group has given me the support, the tools, and the time to be able to take care of myself which helps me be a better parent.”

Jerilyn is the mother of two children with a life-threatening illness. “My mind has always spun in circles with constant fear and worry. I never imagined even for a day I would learn to how to ‘turn off’ that anxiety.” She credits the lessons in breathing techniques, mindfulness, and healthy living with achieving this. “Although we will still continue to be a support group for one another after this program is over, I am confident each and every one of us is left a new person, a new mom, a new wife, and a new friend.”

Nicole’s story

Nicole White and her husband, Garrick, were both working at Rhode Island Hospital when they learned Nicole was expecting. Nicole was employed as a unit secretary in the neuro ICU department, and Garrick in the hospital’s environmental services.

Nicole remembers the increasingly frequent ultrasounds before her son, Kyrie (pronounced Ki-RE), was born. Due to a rare disease, gastroschisis, her son’s internal organs and intestines developed outside of his abdomen. In the ultrasound images the baby was obscured by the intestines. “It looked like spaghetti,” she recalls sadly.

“When he was born I was not able to hold him for nine days.” At six days old, he had his first surgery. Once home, he required a feeding tube in his stomach, and a syringe over his crib.

For the first three years of Kyrie’s life, Nicole would often wake at Hasbro Children’s Hospital, where she had spent the night with her son, walk to work across the street at Rhode Island Hospital, and then return to the other hospital to spend time with Kyrie during her lunch break. “He could go home for a month, occasionally.” This relentless schedule required Nicole to take leave each year from her job.

By the time he was 8 years old, Kyrie had undergone 19 abdominal surgeries. Until three months ago, he was receiving IV nutrition. He is now on a new medication.

This is the very child who is currently in charge of photocopying and the postage meter at A Wish Come True, where his mom, Nicole, is the Wish Granting Coordinator – and he has designs on her job. He and Missy the wish dog, who he refers to as the mascot, welcome the younger children. He’d like to answer the phone, but here Mary-Kate draws the line. “He wants his own office,” she reveals.

Kyrie does not think of himself as brave, just a regular kid – “I feel like it, I act like it!” – and as he grins you notice his sweet birthmark above his smile. Five years ago, his wish came true when he and his family were treated to a trip to Disney World. Today he is an avid soccer player, and building with Legos and playing Pokémon Go are activities he enjoys with his dad. (Pikachu is his favorite Pokémon.) Beyond Legos, Kyrie also designs and creates buildings using Roblox, an online game platform.

For a moment you might forget you are speaking to an 8-year-old boy. His confidence and his vocabulary seem to belong to an older child.

“We’ve been blessed by him,” Nicole says. “When we ask Kyrie to do something, he does it without argument.”

Nicole has not had a full night’s sleep since Kyrie was born, waking two times a night to tend to him. When the Be Well program was developed, she says, “I was over the moon!” Of the program’s success, she beams: “We have proof every Thursday night!”

Nicole reflected on her experience with A Wish Come True from a parent’s perspective. She describes A Wish Come True as “a missing piece that has become a blessing. We go from being a parent, or like myself, first-time parent, right to becoming a nurse specializing in a rare complex medical condition, advocate, and full-time caregiver and provider for the rest of your child’s life.”

For Nicole, the Be Well program itself has been a wish come true. And without even knowing it himself, so has Kyrie.

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