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Gabrielle Dinsmore Hope & Heart Fund brings joy to children with cardiac deficiencies

By Jane Fusco

Every time Louise and Jeffrey Dinsmore see a ladybug, they take it as a sign from heaven sent by their daughter, Gabrielle, who was fascinated by ladybugs. Gabrielle died from a congenital heart deficiency shortly before her third birthday.

After her death in 2010, the Dinsmores founded the Gabrielle Dinsmore Heart & Hope Fund in memory of their daughter, and to provide educational, emotional, recreational and financial support to children and families impacted by congenital heart disease, heart defects and those with severe feeding issues.

Their desire to start the Fund was sincere and heartfelt. As stated on their website at heartandhopefund.com, they did it “because we know what it is like to have a child with a congenital heart defect that requires multiple open heart surgeries, daily medication, physical limitations. Because we know what it is like to have a child that is unable to eat and requires a feeding tube. Because we understand milestones and setbacks, beautiful days, and a profound loss.”

Their loss was indeed profound, but they knew that little ladybug would give them the courage to continue the journey by helping other children and families who were experiencing what they did.

Gabrielle adored ladybugs and loved when they somehow made constant appearances in the Dinsmore’s home, especially when her mother was combing her hair in the bathroom, where the ladybugs seemed to be ever-present.

When all hope was gone, Louise asked her daughter to give her a sign that she had made it heaven.

On the night that Gabrielle died, a single ladybug appeared in the place where her mother always brushed her hair, Louise Dinsmore said.

“After losing a child, you’re kind of in a fog,” said Dinsmore.

Soon afterwards, the Dinsmores were approached by Dr. Lloyd Feit, a pediatric cardiologist at Hasbro Children’s Hospital who had treated Gabrielle, about starting a camp for children with heart defects.

The Dinsmores jumped at the chance to help make the journey a little easier for children with heart defects, while also honoring their daughter’s memory. Plus, establishing the camp aligned perfectly with the type of work that the Dinsmores knew best. Louise is a professional fundraiser and Jeffrey works for a human services agency that teaches life skills to young people with emotional and behavioral difficulties.

Gabrielle’s Heart Camp was soon formed as part of the Fund, and families from throughout the community were registering to attend the five- or three-day camp, depending on age, held every year in August. The camp, located in Burrillville, costs nothing to attend, and gives the children a chance to gain independence and take responsibility to navigate the challenges of living with heart defects.

Like many summer camps, there are games and activities at Gabrielle’s Heart Camp, such as swimming, archery, riding go-carts, nature walks, and the perennial favorite, carnival night. No parents or technology are allowed, although medical staff is there the entire time. All the activities are geared to showing the children how to make good choices to help manage their condition and give them a sense of belonging in a place where everyone has a heart defect.

Abby Byerlee, 11, has a narrow and severely dilated aorta. She could require open-heart surgery at any time. She has been to the camp three times and made a friend there, Janey, that her mother, Elizabeth Byerlee, describes as, “a bond beyond words.”

“Abby didn’t know anyone else who had a heart condition. She felt alone. Now, she and Janey are inseparable,” Elizabeth said.

Abby’s dad, Bryan Byerlee, said connecting with other kids just like them becomes very important. Despite restrictions to certain physical activities, Abby continues to have as normal a life as possible, Bryan said, and is learning karate.

For the Blais family, heart defects affected two of the three children. Aoife, 10, and Tarynn, 7, were both born with truncus arterious, a rare and complex condition that leaves no heart wall and two blood vessels that have fused into one. Tarynn’s condition was diagnosed prenatally; Aoife’s was not.

Aoife had her first open heart surgery at 16 days old, and another at age 5, along with several catheterizations.

“Heart defects are not something that most people know about,” said mom Heidi Blais. “When Aoife was born, we were told that she had a rare heart defect and she had to have surgery. (The doctors) told us not having surgery was not an option,” she said.

The lifelong condition will need constant repair because the artificial valves inserted do not grow with Aoife and will need to be continually replaced.

Aoife will be attending the camp for the third time in August, and is looking forward to carnival night, because “it’s the best,” she said.

Since no parents attend the camp, and no cell phones are allowed, the Dinsmores post photos on the Fund’s website to let the parents see their children having fun and let them know that they are okay.

“We can’t wait for the pictures to post,” said Blais.

Louise Dinsmore said that the camp is as much for the parents as it is for the children because it gives the parents a break from the 24/7 constant care these children need.

Additionally, the Fund provides financial assistance to families who are struggling with mortgage payments, utility bills, buying groceries and other necessities while their children are in treatment.

As for the ladybug, she appears everywhere. The Dinsmores incorporated the ladybug into the logos for both the Gabrielle Dinsmore Heart & Hope Fund and Gabrielle’s Heart Camp. The camp’s tagline is giving you wings to reach your potential. The ladybug is on every piece of literature and at every event that the Fund holds.

“I don’t want people to forget Gabrielle. She had a short but a meaningful journey,” said Louise Dinsmore. “And these kids, they really have special hearts.”

For more information about the Gabrielle Dinsmore Heart & Hope Fund and Gabrielle’s Heart Camp, or to donate, visit their website at heartandhopefund.com or call 401- 270-9580.