Belfast community pulls together to help girl with hydrocephalus

Posted Nov. 09, 2011, at 6:57 p.m.
Last modified Nov. 10, 2011, at 5:32 a.m.

BELFAST, Maine — Vivian Simone, nearly 3, is a vibrant redhead who favors sparkly purple pants and loves turtles.

She also is suffering from a sometimes-fatal medical condition called hydrocephalus, or swelling of the brain. But Belfast community members are rallying around the little girl and her mother, Pati Toy, to help them out during a very tough time for the small family.

“I’m a little blown away by it,” Toy said Tuesday about the help and attention she and her daughter are receiving. “That’s why I’m glad we live in Belfast. That’s why I’m glad we’re here.”

Vivian is the first beneficiary of the new Waldo County Family to Family Fund, a program that will work with and raise money for a family in the county that is in financial crisis because of illness or another circumstance.

The fund is part of the Belfast Institute of Lifelong Learning, a nonprofit organization that works to enrich the city, according to secretary/treasurer Susan Guthrie. When member Jennifer Armstrong, a storyteller and musician, suggested helping a family each year, the idea was an instant hit. And Guthrie knew the perfect first family — Vivian and her mom.

Although Toy, 35, had worked all her life, when she had her daughter she became a full-time caregiver. Vivian’s needs — she just had her third major surgery at the end of October in Portland to relieve the pressure on her brain — mean that the little girl can’t go into day care. And without an extended family to help out, Vivan and her mom were “falling through the cracks” when it came to paying for rent and other needs, Guthrie said.

“Many of us have been picking up and helping her. We’ve gone public with it because it’s gone to a crisis point. Suddenly that little girl is having brain surgery,” Guthrie said. “We’re just trying to get [Toy] on her feet, because she will get on her feet.”

The community has rallied, so far raising about $3,000 to help Vivian and her mother. Diners who sit at a particular table at Darby’s Restaurant and Pub can indicate they would like 10 percent of the cost of the meal to go to the fund. Fund organizers plan to hold a music and poetry event at some point in the future. And a music video made by Armstrong that features photos of Vivian has been sparking attention and donations from all over the country.

“We’ll be helping this family into the new year,” Guthrie said. “It takes a village. And Vivian’s like a granddaughter to many of us.”

Toy, cuddling on Tuesday with her daughter at their cozy apartment on High Street, said that Vivian’s brain is too big for her skull and she has had the very painful condition since birth. Doctors have had to cut out a small piece of her skull and expect to perform more surgeries on her in the future to drain fluid from her skull.

Over the years, Vivian has spent significant time at Maine Medical Center in Portland as doctors drilled a hole in her head and then attached a shunt to drain the fluid out. Back home in Belfast, she goes to Waldo County General Hospital five times a week for occupational therapy and special care. Right now, Vivian has problems with her balance, developed sleep apnea last spring and may have trouble with her vision as a result of her condition, her mom said.

“That’s our reality. It’s very scary at times,” Toy said. “We don’t take things for granted.”

She said that it is hard and humbling to need help but she is thankful for the support she has received from Belfast. She was raised in Pennsylvania but decided to come to Maine at age 19, and has lived here ever since.

“I’m very grateful for the help. Vivian needs it. We need it,” Toy said. “We have a lot of good people in our lives. We’re fortunate.”

One day she hopes to be able to go back to school, perhaps to study social work.

“I truly believe, deep down in my soul, that Vivian will overcome all this medical stuff,” she said. “Vivian is so amazing. She’s got a good sense of humor … she does not give up. She has a lust for life.”

For information about how to help Vivian Simone and the Waldo County Family to Family Fund, visit www.helpvivian.org/.

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