The day Louise and Jeff Dinsmore were told that their only daughter, Gabrielle, had a congenital heart defect, was the loneliest day of their lives. They were in a room, surrounded by doctors, nurses, other caregivers, and later family and well-meaning friends, but were alone. There was no one they could turn to, could lean on, who knew exactly what they were going through, had experienced what they were facing. No one in their lives could fully understand their constant stress of medical appointments, surgeries, medication, trips to the emergency room. Their sadness when Gabrielle lost her heart battle just weeks before her third birthday.
Louise and Jeff were looking for other parents to help navigate what they would have to deal with; from Gabrielle’s initial diagnosis to her passing, to learn to live with constant worries and loss. They were looking for a community where none seemed to exist…
Just at the time when Louise and Jeff had difficulty seeing any future, their daughter’s cardiologist, Dr. Lloyd Feit, Director of the Pediatric Heart Center at Hasbro Children’s Hospital, shared an idea. While amazing advancements in the treatment of children with congenital heart defects and heart disease had been made, very little had been done to help these children learn to manage their lives, to have a productive life with their chronic condition. Dr. Feit envisioned a summer camp, where these children could come together with trained caregivers, to have a summer experience focused both on them simply as kids and as someone living with a heart condition.
A spark ignited in Louise and Jeff. This camp could be the beginning of a community, could connect children and parents in a life-changing way. And would give meaning and purpose to Gabrielle’s beautiful life.
What started as a dream has become a reality. Together with Dr. Feit and a small team of nurses, they hosted the inaugural season of Gabrielle’s Heart Camp in 2011 with 36 participants. Today, approximately 70 children attend camp each summer, supported by two cardiologists, nurses, an EMT, and psychologist, along with a crew of heart-survivor counselors. This was all made possible through the generosity of hundreds of families, friends, corporations, and foundations, who have supported Gabrielle’s Heart Camp through donations and volunteer time.
Realizing the success of the camp was not enough; Louise and Jeff knew they had to do more for this community. They began asking Gabrielle’s caregivers what they thought families needed, where daily support was most crucial. Time and time again, these caregivers wished they could help families with the daily emotional and financial stress of caring for a critically ill child. However, most hospitals do not have the resources to add support staff or funds to help families with expenses.
Though both their experience as heart parents and their professional expertise, Louise and Jeff knew they could communicate how quickly financial and emotional stressors build and find this support for hospitals and families.
Just five years later, the Gabrielle Dinsmore Heart & Hope Fund is a major financial resource for the community. In addition to supporting its signature camp program, the Fund has provided significant grants to hospitals including the Pediatric Heart Center of Hasbro Children’s Hospital, Connecticut Children’s Medical Center’s Cardiac Program, Boston Children’s Cardiac Programs, Easter Seals Rhode Island, and Meeting Street, allowing them to expand their family support services and reach hundreds of children. This includes a social worker staff position, support groups, and a family assistance fund. The partnership between these organizations and the Gabrielle Dinsmore Heart & Hope Fund supports families in a fundamental way, when they need it most.
In addition to larger grants, families can also apply directly to the Gabrielle Dinsmore Heart & Hope Fund for financial assistance for daily hospital expenses and household bills. There is a very special connection between these families and the Fund. They often have no words to express their appreciation and relief for these resources. And on many occasions, the Dinsmores will learn of a family that is struggling and will reach out to them personally.
As they look towards the future, the Dinsmores and their committed Board of Directors are focused on expanding the education and outreach programs offered by the Gabrielle Dinsmore Heart & Hope Fund. The vision is to bring its unique combination of fun and learning, support and connections, to this community on a year-round basis.
Today, when parents receive a diagnosis that their child has a congenital heart defect or a severe feeding issue, they have a place to turn to – Gabrielle Dinsmore Heart & Hope Fund. It is a place were parents can connect, simply to talk about their child’s condition. A place where families who are facing financial struggles can ask for tangible support. A place where a child with a heart condition can have fun and make friends, safely push limits, and learn about their condition and themselves. It truly is a community that is growing every day…
“Jeff and I knew we wanted to be that support system, to build a community for other families learning to cope with congenital heart defects and severe feeding issues. That we could make a difference to other parents and children by sharing what we had learned and experienced. That we could make their lives just a little easier. That we could be part of families living and thriving with their diagnosis.” [float quote in margin with photo of Jeff, Louise, and Gabby]