A place to rest
The Butterfly Ball will raise money to build a home where families with disabled or ill children can relax and rejuvenate.
Amanda Bohannon’s life, her plans and her goals have undergone a metamorphosis.
After losing a daughter to a degenerative illness, she is now passionate about creating a place where local families can escape from their troubles, if just for a short time.
She’s the driving force behind The Sweet Cocoon, a non-forprofit organization she started when her daughter Marlowe was struggling with a terrible illness.
“Marlowe was diagnosed with Sanfilippo Syndrome when she was four years old,” Bohannon said. “It’s an enzyme deficiency that caused her to have developmental delays. It’s a progressive disease that causes a person to deteriorate over time.”
Bohannon said Marlowe died at age 18 but her last seven years were spent in a wheelchair. She lost the ability to speak or swallow and needed a feeding tube to take food. Although she had a funny, mischievous personality, Marlowe couldn’t communicate well and didn’t have the fine motor skills to learn sign language.
“At 18, she had regressed to the cognitive level of a one-year-old,” Bohannon said.
Marlowe died in August, 2012 at 18 years old. But by the spring of that year, Bohannon said she knew what she was being called to do.
“It was laid upon me that I was supposed to build this house,” she said. “God said build this house.”
“This house” is a large, comfortable retreat where local and area families with disabled or seriously ill children can get away for a few days. It will include a pool, a theater, games, activities and even animals.
“When Marlowe was in and out of the hospital I had to figure out how to care for her, work, pay the bills and I also had another daughter I had to raise,” Bohannon said. “I was exhausted and stressed. And with a child in that situation you can’t just pick up and go on vacation.”
Bohannon said she knows that when families with disabled or seriously ill children want to go on a vacation, they have to worry about traveling with all the necessary equipment and medication and must also make sure their destination can accommodate a wheelchair or oxygen tank or feeding tubes as well as a slew of other considerations.
So her hope is to build a large, comfortable home that can accommodate up to two families at a time. The home will be equipped with all the conveniences and necessities to care for a family with various medical requirements. But more importantly, the home will be staffed with people who are trained and qualified to assist families in having a truly relaxing getaway.
“We want families to be able to stay for three or four days not worry about anything,” Bohannon said. “We want the entire family to have fun and function just like any normal family on vacation. It’s a break. It’s a respite. Mom and dad can go on a date night while nurses and caregivers look after a sick child.”
The stay will be free to the families.
But the Sweet Cocoon’s work in the community has already begun. The organization also has a siblings program, Bohannon said, since the siblings in families with disabled or ill children often feel forgotten since their parents must dedicate most of their time, energy and resources to caring for the sick child.
Recently, the group rented out Miracle Field at State Mutual Stadium and took a group of siblings to a Rome Braves game.
But the home is the organization’s big goal. So the Sweet Cocoon needs funding to secure land. The board of directors has already had plans drawn up for the home.
The upcoming Butterfly Ball will be a major step in the fund raising efforts. The event will take place above the Rome Area History Museum, 305 Broad Street, on Oct. 3 from 8-11 p.m. Intended for adults, the ball will include live music by local band Little Known Letter. The will be heavy hors d’ouvres and an open bar. Tickets are $50 and can be purchased online at www. thesweetcocoon.com, by emailing Amanda@thesweetcocoon.com or by calling 706-506-7437.