Scouts honor girl for bone-disease video.
BOURNE -- When Hailey Manduca made a documentary about her struggle with brittle bone disease, she called it, appropriately enough, ''Unbreakable Spirit.''
The 16-year-old Bourne resident has experienced broken bones at least 130 times in her short life and relies on a walker, wheelchair or service dog.
But that hasn't stopped Manduca from excelling in Girl Scouts and earning its highest honor: the Gold Award.
The award recognizes a service project that fulfills a need within a girl's community. In Manduca's case it is a 45-minute video about brittle bone disease -- osteogenesis imperfecta -- that takes viewers on a tour of her appointments at Children's Hospital in Boston. In the video, Hailey speaks directly to the camera about the challenges presented by the disease, and there also are interviews with friends and family.
''Yeah, we have a bone disorder, and it stinks,'' she said in a recent interview. But rather than complaining, she created the video to help spread understanding and awareness of the disease, she said.
''I did the video for doctors, nurses, new families. I kind of wanted the patients and the doctors to understand it better,'' Manduca said. She said parents of newly diagnosed children need more than a ''little paragraph on our disease.''
Manduca presented the video to a panel of Girl Scout officials in Middleboro this month and received a certificate for the Gold Award, for which she will receive a pin and badge at a ceremony Jan. 10 in Buzzards Bay.
Patricia Parcellin, CEO of the Girl Scouts of Eastern Massachusetts, which stretches from north of Boston to the Cape and Islands, called Manduca ''a remarkable young woman'' and said her ''desire to make a difference and strength of character make her a great example of what it means to be a Girl Scout.''
With just about 60 of the thousands of Girl Scouts in the Eastern council earning the Gold Award, considered the equivalent of the Boy Scout Eagle Scout award, Manduca is in elite company.
But not at home.
Her 18-year-old brother James, who also has osteogenesis imperfecta, became an Eagle Scout in June.
Her brother's achievement spurred her on, said Manduca, who said that in her family, ''Girl Scouts and Boy Scouts are our sports.''
''There's quite a competition when it comes to Scouting,'' she said.
Their sister, Savine, 19, and mother, Cheryl, also have osteogenesis imperfecta, a genetic disorder that causes people to make too little collagen, part of the framework around which bones are formed.
Manduca has a more severe version that combines two types and also has resulted in her having a short stature due to dwarfism.
Osteogenesis imperfecta has been compared to being a brick in a wall without enough mortar, her mother says in the video: ''It will still stand, but it will tend to crumble.''
Not that there is anything weak or crumbly about Hailey Manduca's spirited personality.
For an interview she pulled her long dark hair off her face with a flowered headband and wore fuzzy orange socks with her regulation-issue Girl Scout uniform of khaki pants, vest and white shirt.
''I can wear orange every day,'' she said. She rides a Razor 360 -- sort of a metal Big Wheels tricycle -- in the halls during appointments at Children's Hospital and greets her personal care attendant, Kimmie Gronlund, by impishly sticking out her tongue. Gronlund responds in kind.
Her father, Richard Manduca, maintenance superintendent at the Clay Cove Pond apartment complex, called his daughter ''16 and full of fury.''
Around the Girl Scouts, she's full of fun, said Linda Saffle of Sandwich, the leader of Senior Troop 826.
''Hailey is always such a positive influence on everybody. Always happy. Always smiling,'' she said. Manduca deals with her disease ''with such poise and maturity for her age.''
''It puts some adults to shame,'' Saffle said.
Manduca said she's learned to be philosophical about her illness.
''Even though it gets tough, your spirit can never be broken,'' she said.
By many measures, she's had it tough.
Brittle bone disease means her bones can break for seemingly inexplicable reasons, such as turning over in bed or stepping off a weight scale. Her bones were broken even in utero, her mother said.
Doctors said Hailey wouldn't live two weeks and told her parents to take her home and love her, she said. ''They told us she would not walk or talk or anything.''
Special newly designed rods fitted to her femur and tibia provide some protection, and new medications, such as pamidronate, help with pain and minimize breaks.
Teenagers with osteogenesis imperfecta tend to start having fewer breaks, although they take longer to heal, Manduca's mother said.
Despite her many doctor's appointments, Manduca has a busy schedule, singing in the church choir at St. John's the Evangelist in Pocasset, where she also works one day a week. She is home-schooled.
She enjoys camping with her family and participating in Girl Scouts, playing video games and following boy bands on Facebook and Twitter.
''I'm still a normal teenager at 16,'' she said.
Twice a year she attends Little People regional events, and she also participates in an Easter Seals mentor program called Inspiring Young Women.
Three other girls in the program also have brittle bone disease, Manduca said. ''They understand what it's like when people stare at them.''