Gracelyn Ward was born with a rare genetic disorder called Trisomy 18 giving her less than a 1 percent chance to live past the age of 1. She's now 17 and has found a new technology called Eagle Eye that helps her finally have a voice.
Before Ward was even born, doctors knew she had problems.
"She was dying in-utero and they said there's a chance she can have this disorder Trisomy 18," said Ward's mother, Teresa Ward.
Trisomy 18, also known as Edwards syndrome, stems from the presence of an 18th chromosome. Some 90 percent of conceptions end up in a miscarriage; of babies that are delivered, about half of them die within the first three or four days. Newborns who live beyond the first few days face a 90 percent chance of death within their first year.
Beyond that first year, there isn't any concrete data for surviving with Trisomy 18 because so few children make it -- but Gracelyn, also known as Gracie, is one of them. According to her parents she's one of about 30 Trisomy-18 teenagers in the country, but getting there hasn't been easy.
"There's been times that I have begged God to take her because she's been so sick that I couldn't stand to watch her suffer," Teresa said. "We've told her to go to heaven, and a couple of days later miraculously she's fine."
Gracie can't walk or talk and she can't hear well -- but for all the obstacles in her life, a new technology known as Eagle Eye lets her use what she can do to finally have a say in her life for the first time.
Eagle Eye, one of the latest advances in assistive technology, works by hooking up tiny electrodes to a patient's face, then responding to the movement of facial muscles as he or she looks at a screen. It only requires a split-second look for Gracie to have more control over her life, by selecting icons on the screen to form messages. The computer then speaks to match her selection.
The state Special Education Service Agency in Anchorage helped provide Gracelyn with the Eagle Eye technology. SESA's Jennifer Schroeder programs the Eagle Eye software specific to Gracie's needs.
"The way the program is set up, is you only have to dwell on something for a tenth of a second and something happens," Schroeder said.
One program uses pictures of Gracie's family. If Gracie wants to refer to a specific family member, she can kick into the program which then goes into a screen with pictures of the Wards. If she wants her mom, she moves the mouse cursor with her eyes to the correct picture and the program will then say "Mom."
"It's actually external instead of internal, but the great thing about it is Gracie can be in any position and use this," Schroeder said. "It's very sensitive and within the software itself you can change the sensitivity levels, how fast the mouse is going and the dwell time."
Eagle Eye has enhanced the school experience for Gracie. Her special education teacher, Sheryl Ross, says the software has made Gracie's school goals more easily attainable.
"The goals were to get a really definite yes and no from her to meet her needs, and for her to be able to not only recognize what the body parts were so she could be able to tell us where she's in pain," Ross said.
Teachers say Gracie can hold a conversation at a 17-year-old level and will respond. The communicative partner has to be in tune to Gracie and meet her more than halfway.
"I think if we have a deficit or disability we're not able to communicate in one way it's our responsibility to find a better way and to enrich our kids' lives," Ross said. "It's a cliche, but if we really love our kids and love teaching, we're going to look for those avenues."
Gracie is now in her second year at Ketchikan High School for the second year in a row. The Wards had given up on school for Gracie -- but once Ross got in the picture, they found it again. After much convincing, both Craig and Teresa allowed Grace to go back to school and with Eagle Eye the world is starting to open up.
"It's made her be able to do something independently and I think in her whole life there's been very few things she could do independently," Teresa Ward said. "She can make choices if she wants to do something or even if she doesn't want to do Eagle Eyes, that's a choice she never had before."
Most of the time, Gracie likes Eagle Eye. For most of her life, her beautiful brown eyes have searched for a way to express her wants and needs -- but now, for the first time, her eyes can do the talking.