When Cynthia Roy was 16, her best friend Leslie died of leukemia. Cancer remains second behind accidents among causes of death for children ages 1 to 14, according to the American Cancer Society, which estimated nearly 1,200 cancer-related deaths for children younger than 15 in 2019.
Roy, now president and CEO of Regional Hospice, has made it her mission to create a comprehensive nexus of services for end-of-life patients wherever they are — in their home, in a skilled nursing facility, or at the Regional Hospice Center for Comfort Care and Healing in Danbury.
The center, which opened in 2015, features 12 in-patient suites that feel like luxury hotel rooms with an Ethan Allen vibe. Patients dine on professionally prepared meals and have access to salon and spa services, a library and recreation, as well as the outdoors.
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While Regional Hospice cares for patients of all ages, it specializes in providing end-of-life care for children and their families, and in December the nonprofit announced a Building Under the Stars initiative to create a dedicated wing with four thoughtfully designed in-patient rooms for children on the second floor.
“I wanted to have a space for kids that was unique and different. I want it to be special, I want it to be playful, I want it to be light and airy, and I want it to be just for kids,” Roy says in an explanatory video about the new North Star pavilion. Like the existing rooms, it will feature an element inspired by the experience of Roy’s beloved friend Leslie.
“One of the things that was so difficult was that she couldn’t get outside when she was dying. … So I knew one of the things that was integral and one of the most important things we had to do was to have a center where beds could actually go out onto the patio and go into the garden and patients could feel the sunlight on their face.”
Designed by the Westport-based architectural firm Roger Ferris + Partners, the North Star will be the first dedicated in-patient hospice wing for children in the Northeast and just the fifth in the country. A five-year capital campaign has a goal of raising $15 million, and assuming early fundraising goes well, the North Star will accommodate its first patients in 2021. Regional Hospice provides services to between 10 and 15 children a day, and more than 1,000 patients a year.
“To think about creating that space that could be the respite at the end of one’s life or the sort of final weeks of one’s life, and what that space needs to be and embody is a privilege,” Roger Ferris says in the video. “I want a child to feel embraced the minute they enter the building.”
The rooms for children, also feeling more like hotel suites, will look out over the woods, where special walking paths will be installed, and there’s already a playground at the center.
The defining element, however, is hinted at in Building Under the Stars’ name — dramatic starry skies filling each ceiling to allow children to go to sleep under the veil of the nighttime sky, “marvel at the complexity and beauty of our true nature,” and know “we are all a part of something much greater than us.” It’s a theme integral to the goal of encouraging young patients to live fully until they die.
“The nighttime sky speaks to infinity and everything beyond, and it’s full of promise,” Ferris says in the video with Roy, who adds of young patients, “They can imagine laughing in the stars, having fun in the stars, they can imagine the hope in the stars, and that is the reason I want to build the children’s wing.”
One important component of the North Star is respite care, which means providing temporary in-patient care for children who are otherwise being cared for at home in order to give parents and other caregivers a respite. The $15 million being raised will include a foundation for respite care, considered critical as most insurers don’t cover it. Roy and Ferris planned to visit Ryan House in Phoenix early this year to learn more about the hospice and respite care model there, with plans to incorporate elements into the North Star plans.
At a Building Under the Stars launch event in early December, a song performed by New York City singer-songwriter Jonathan Davis brought guests to their feet for a standing ovation. Davis wrote “One Wish” for the event, and according to Regional Hospice, has offered to write a song for every young patient who comes to the North Star wing.
A video played at the launch event, titled “Emily’s Last Wish,” included an animation of the Regional Hospice picture book developed to present hospice from the perspective of a child arriving for end-of-life care. The animated Emily — based on a real hospice patient, 10-year-old Coryn, who had terminal brain cancer — says her last wish is “that every sick child can see twinkling stars.”
Specially designed rooms for children will look out into the woods and feature a star-filled night sky on the ceiling.
30 Milestone Road, Danbury