MONROE — “Hospice was the gift we didn’t know we needed.”
That remark among many touching recollections of her late brother by testimonial speaker Casey Cummings brought over 200 people to their feet during the 2022 Newtown Giving Circle Summer Breakfast, a fundraiser for Regional Hospice presented June 15 at The Waterview.
Cummings received a standing ovation after sharing the story of her brother, a young man who died at the age of 17 after battling a rare neuromuscular disorder.
The Cummings family, represented by Casey, shared that they were all with Tyler when he took his final breaths at The Center for Comfort Care & Healing in Danbury.
Tyler “fought a long and mostly victorious battle,” Casey said, against AGT-BPD1, a neuromuscular degenerative disorder very few people have heard of, she added.
While the number of attendees this year was smaller than the last time the Newtown-based group held its major annual event — in a pre-COVID 2019 — co-organizers Marg Studley and Marie Sturdevant were still very pleased.
“We’re essentially starting over after the worst of the pandemic,” Sturdevant told The Newtown Bee as guests were arriving. “We had 40 tables last time, and 23 today, which is a good start.”
Studley agreed, saying this year’s event, following two years of cancellations, “is like starting all over again.”
The co-chairs maintained the event’s traditional schedule, promising attendees a full breakfast and speaking program concluding within 60 minutes. This expedited program allowed guests, most heading to work straight from the fundraiser, to plan the rest of their day while being able to still support the cause in person.
Newtown resident Bill Brimmer opened the event by inviting everyone to stand and join him in singing “God Bless America.”
Monsignor Robert Weiss, pastor of St Rose of Lima Roman Catholic Church, offered a blessing, sharing the words of Mother Theresa, saying, “Not all of us can do great things but we can do small things with great love.”
His prayer acknowledged the “patience and kindness” of the staff and volunteers at Regional Hospice, remembered those in hospice care and those caring for them, and thanked Regional Hospice “for reminding us that there is dignity to every life.”
Once breakfast was served, Regional Hospice President and CEO Cynthia Emiry Roy addressed attendees. She noted the challenges of working through COVID and its effect on staff, volunteers, patients, and families.
Roy also announced a new partnership with Norwalk Hospital, and some recent renovations done at the nonprofit agency’s headquarters.
She added that while many people think the work at Regional Hospice “must be depressing, we find it to be an incredible blessing to be with someone at the end of their life.”
Patience, Understanding, Empathy
Roy was followed by Cummings, whose parents were also in attendance. She opened by telling attendees she was 17 years old — the same age her brother Tyler was when he passed away three years ago from a rare juvenile form of ALS. She explained that the disease causes the nerves and muscles in one’s body to break down.
Before becoming very sick, Tyler was a swimmer, played baseball, made the honor roll, and absolutely loved WWE, his sister shared. Standing at the podium, Cummings shared more of Tyler’s journey, “after several missed diagnoses.” As she spoke, the room grew quieter. Fewer utensils were heard against plates, and conversations ceased.
Doctors at Boston Children’s Hospital were able to get Tyler into a research study at National Institutes of Health, according to Casey. Nearly a year after the family’s DNA and gene samples were sent to France, she said, “doctors and researchers found the gene that eventually caused my brother to pass away.”
The family was told, “there is no cure, only limited treatments, and there would be no saving Tyler during any of our lifetimes due to lack of research, advocacy, and funding,” Casey said.
Tyler lived at Boston Children’s Hospital for six months, Casey said. His one wish was to go home. He returned to the family’s home in Easton in March 2019. Soon after, the family “made the impossible decision,” said Casey, to begin hospice care that June.
While the first instinct was a feeling that they were giving up “on this precious life,” Casey said, “to this day my whole family agrees we couldn’t have been more wrong. Regional Hospice was the gift we never knew Tyler needed and was searching for.”
Casey shared the steps she and her family took during their experience during and after Tyler’s illness and very peaceful passing.
“The Regional Hospice staff not only helped give my brother a comfortable transition out of his life, but allowed us to be as a family throughout the process,” she said.
Her parents were allowed to give up some of their worry, and she was again allowed to just be a little sister. Staff and volunteers offer “patience, understanding, and an empathy that no one else can provide,” Casey said.
She and her parents found those at hospice were the first medical professionals to be “open and honest,” she said, about Tyler’s diagnosis and life expectancy. All questions were allowed, she said.
“We were prepared, as much as any family can be, to say Good-Bye,” she said. “It was wonderful, and heartbreaking, and everything in between.”
Tyler died on July 16, 2019, at The Center for Comfort Care & Healing.
Hospice For Survivors, Too
Cummings then reminded the audience that Regional Hospice is not only for those who die, but also those who are left behind.
“My family and I recognize that we have been able to get through our suffering thanks to the unconditional support Regional Hospice has provided us,” said Cummings, who has become an advocate for rare disease and has become a published author, having shared some of her stories.
Having gone through the hospice process with her brother, she said the word hospice now means “peace” to her.
“Hospice gave us the best weeks of our lives with Tyler,” she said. His final days, she said, were like a dream, watching family and friends say good-bye to her brother. Although he was unconscious for his final 24 hours, the family had been told he knew they were with him.
Ty-Man, as the family called him, “was the love of our lives, and is deeply missed every day,” Cummings said. Her voice breaking, she took a deep breath before continuing.
“He was the ultimate survivor. He was the oldest known living warrior of his rare disease at the time of his passing,” she shared. “Tyler would light up any room with his smile, vibrant personality, his steel blue eyes, and fist bumps.”
Cummings closed by thanking those from Regional Hospice who were in the room for inviting her to share her family’s story that morning, and for attendees for listening to the story of her “amazing brother Tyler,” she said.
Hospice taught her family, she said, “that grief is love.
“I hope our family’s story will inspire a personal call to action today,” she said, “to encourage all of you to support Regional Hospice by making a donation through the envelopes on your table.”
Donors for the event sponsored tables, while guests were encouraged to support Regional Hospice by leaving donations at their place setting. Through those donations, and funds raised through raffle tickets also sold that morning, proceeds from the event will benefit Regional Hospice.
According to notes in programs distributed that morning, all donations from the breakfast event go toward offsetting the $1.8 million of annual patient costs not covered by insurance.