RICCI AND SUSAN FURLANI pose at the entrance to their home, “No Place Special,” in Mashpee, Mass. The Furlanis, who lost both their daughters to a rare genetic disorder called Sanfilippo syndrome, hope to invite caregivers of the terminally ill into their home as a respite.
T he Seconsett Island home of Susan and Richard “Ricci” Furlani was built of music and laughter.
A FAMILY PHOTO of Ricci and Susan Furlani with their daughters, Elizabeth and Emily, is shown at their Mashpee, Mass., home.
“We want to make it when people come, they don’t have to pay anything,” Susan said.
The house, which they call “No Place Special,” has always been a labor of love.
Ricci, a master carpenter, took what was a tiny cottage and created a turreted, two-story house large enough to host concerts.
And it was musician friends such as Jen Murdza, Larry Zarella and Tom Bianchi and his wife, Danielle Maraglia, who hosted benefit concerts that allowed the Furlanis to complete renovations that made the house handicapped accessible for daughters Elizabeth and Emily.
Both were diagnosed as children with a rare genetic disorder known as Sanfilippo syndrome.
Elizabeth died June 16, 2010, at age 24, and Emily followed Sept. 22 of the same year at 22.
The Furlanis marked the girls’ passing with a Mardi Gras-style parade, boat trip and tea party, according to each young woman’s personality.
“We didn’t do anything conventional,” Ricci said.
Elizabeth, with huge green eyes and a powerful, mellifluous voice, shined among groups of people.
“We handed everybody an instrument. Everybody had to play something. Nobody loved music more than Elizabeth,” Ricci said.
Emily, who showed evidence of disabilities at a younger age, was quieter and loved American Girl dolls and drinking tea.
The Furlanis ordered pastry from Europe and borrowed silver tea sets for her memorial.
Despite the girls’ passing, the house still exerts a magnetic pull, said Olivia Underwood, the Furlanis’ niece.
She moved in to help take care of her cousins and has stayed on. “I dreamt about this house so many times.”
Designed in part along the curving lines of a ship, “No Place Special” features a great room centered around a wood stove.
With five bedrooms and four-and-a-half bathrooms, the Furlanis envision hosting up to two or three caregiving couples at a time.
“We want them to be able to rest and have someone take care of them,” Susan Furlani said. People can choose what to do, whether it’s playing or listening to music, going out on the Furlanis’ boat or spending quiet time reading a book in the house’s wooden tower.
Rejuvenation is important, Ricci said. He and Susan continued visiting their favorite vacation spot in Jamaica as a couple even after their daughters became bedridden the last years of their lives.
“If we were burnt, the kids paid for it,” Ricci said.
After Elizabeth and Emily died, the Furlanis took about five of their caretakers on a vacation to Negril Beach.
“There is nothing for caregivers,” Susan said. “There’s no free respite care for people who are doing this 24/7.”
Getting a breather is very important for people caring for the terminally ill, Ellen McCabe, director of professional education at Hospice and Palliative Care of Cape Cod, said.
“If the caregiving situation breaks down, everybody loses,” she said.
Hospice, which cared for Elizabeth and Emily, does not offer places for caregivers to vacation.
However, it has respite programs that allow family members to place loved ones in a contracted nursing home for five days at a time so that the caregivers can attend weddings, reunions or just stay home and catch up on sleep.
As one man on hospice care whose daughter cared for him said, “We all need a break. It gets intense,” McCabe said.
Laughing and having fun “is probably the best coping mechanism you can have,” hospice counselor Ann Geagan said.
Sit down, have popcorn and watch a silly movie, she said.
For the Furlanis, expressing a love of life through music, art and fun was a major coping mechanism.
Sanfilippo occurs only once in about 24,000 births, so the odds their two daughters would both have it were almost too small to count.
Oddly enough, a Sandwich (Mass.) boy, Joey Raftery, also was diagnosed with Sanfilippo. He became a friend of the Furlani girls in special education activities and died a few months before them.
“We need to feel normal now and again — a chance to be like everyone else,” said Joey’s mother, Priscilla Raftery of Forestdale.
The syndrome takes children who would otherwise be considered normal — Elizabeth was a bright child who was reading by age 5 — and robs them of their ability to mentally process information and, eventually, talk normally or walk.
Their regular features change too, as they develop the stocky, heavy-browed look associated with the syndrome.
Ricci compares it to Alzheimer’s for children, especially since sufferers tend to go through a manic stage that can be partially controlled by medication.
The girls were diagnosed at ages 6 and 8 by a specialist visiting Falmouth Hospital in a Winnebago, Ricci said.
Groups of musicians and other friends continued to visit the Furlanis as Elizabeth and Emily declined, going up to their bedrooms to play when the girls couldn’t make it downstairs.
A photo of Emily shortly before she died shows her in her large wooden bed, with special side rails crafted by her father, smiling with her mother and a friend.
“At the end, there were four people on the bed,” Ricci said.
“This house is always open,” he said. “It’s always been a safe haven for whoever needed a bed or a bowl of food.”
The Furlanis asked anybody with ideas on how to start a charitable respite operation to contact them.
“We’re looking for what we should do,” Susan said.
“We need the advice,” Ricci said.
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