Helping ten-year-old Greta McMillan find her voice

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ALL her young life, Greta McMillan has strived to make herself heard.

Smart and feisty, her curiosity in the world around her is more than matched by her determination to play her part – in school, at home, indeed wherever she goes.

Mum Thea and dad Ian are determined to buy Greta her own 'eye gaze' machine. Picture: Jon Savage

Mum Thea and dad Ian are determined to buy Greta her own 'eye gaze' machine. Picture: Jon Savage

But while Greta is as lively in spirit and as full of life and fun as any other ten-year-old girl, she’s remained trapped in her quiet world, her powers of communication frustrated by cerebral palsy and limited to a sequence of blinks – for yes and no – tiny facial expressions and small sounds.

Soon, however, thanks to an incredible community effort which began across the Atlantic and then swept through her home of Portobello, Greta could finally find her voice, using a similar kind of high-tech computer system that helps Professor Stephen Hawking speak.

Friends, family and complete strangers have raised almost £12,000 in just a few weeks to buy the Towerbank Primary School pupil an incredible piece of computer equipment which can follow her tiniest eye movement and turn it into words.

The donations included pocket money sized contributions from school friends to a £2000 contribution from local women who held a clothes swap party, selling their unwanted outfits to each other.

Apart from helping Greta, the fundraising push has helped unite the community which had been fractured following months of debate over the construction of a new high school.

Greta is now days away from having her own “eye gaze” machine – a specialised computer which can turn the slightest shift in her gaze into on-screen actions and words.

Once she masters its technology, it’s hoped she will be able to finally “talk” to her family and school friends for the first time ever, using the computer’s electronic voice.

“It has been incredible to see so many people come together to help Greta,” says her mum Thea. “We can’t believe how kind people have been. Greta has spent most of her life trying to communicate through blinks and facial expression and little sound patterns. I think she knows what she is trying to say but she can’t form the words.

“She puts so much effort into communicating as much as she can but physically, it’s a struggle.

“With this technology we are hoping she will be able to chat to us, to write e-mails and search the internet and communicate.

“It could change our lives.”

Greta and her family are already known to many in Portobello – their home, known as the Ramp House in Bellfield Lane, is a clever structure which was designed by Thea and husband Ian, both architects, with her unique needs in mind.

They have seen her on the computer system at school where she uses it to play simple games. However it was only when she was given the chance to borrow it for a longer period at home and showed such a grasp of the technology, that it became clear with greater access to the equipment, she might eventually learn to “speak” through it.

However parents Thea, 48, and Ian, 45, were told by health support services that because it was difficult to prove its benefits, it couldn’t be provided for free. If they wanted it, the couple realised they would have to fund it themselves.

By chance, at the same time a family friend working as a teacher in Washington DC in the United States told Thea she had been reading a book to her class about a wheelchair user like Greta, who had found her “voice” using similar 
technology.

“She recognised this girl who wanted to communicate but couldn’t,” says Thea. “She spoke to the children about Greta and they asked if she had a similar device.

“I explained we needed to figure out how to fundraise to buy one. Her class came back and said they had held a bake sale and raised £200. I thought ‘okay, if they can do that in Washington, we have friends all over the place, surely if everyone was to do a little bit it would add up’.”

Thea appealed to friends and neighbours for ideas to raise the £12,000 needed to buy the equipment and the necessary software licences. “It just snowballed from there,” she adds.

Greta’s fellow pupils at Towerbank Primary School held a special day when everyone turned up wearing their most “fun” outfits – which alone raised £2000.

At the other end of the scale, one fundraiser who donated through their Justgiving page was seven-year-old Madeleine Harris, who gave £2.50, and wrote: “Good luck with your cool machine. I raised £2.50 selling cheesecake at my front gate today and thought it might help you.”

And another, signed simply “Darcy and Estelle”, donated £119 which they said came from making and selling loom bands.

One donation of over £55, signed by Esme Slifer reads: “My sweet daughter Esme has decided to donate all her saved-up pocket and birthday money. Very proud of her.”

Another, for £25, signed by “The Rendells” sums up what many donors hope: “I can’t wait to see Greta in action with one of these. They are amazing devices and will let us see and hear all the amazing things Greta has to say.”

Greta uses a wheelchair and has limited movement after a difficult birth meant she was temporarily left unable to breath. She is well known in the community and is often seen with her family on their bikes on Portobello Prom. She divides her school days between classes at Towerbank Primary School, where her fellow pupils and teachers ensure she is part of everyday lessons and games, and Oaklands, a special school for children with learning disabilities.

It’s hoped having her own Tobii I-12 computer with its “gaze interaction” facility will give her more time to practise using it, eventually unlocking the door to finally being able to communicate.

“When Greta uses it, her eye becomes a cursor,” adds Thea. “She was using it for 20 minutes, once a week at Oakbank, but that’s not enough for her to get a really good go at it.

“Once she has it at home, she can go on the computer without us being around and helping her. As her eye muscles get stronger, she will be able to choose between different pictures – for example we can ask her if she wants to go to the beach or the swing park and she’ll be able to answer, which will be amazing for her self esteem.”

A special video camera traces movements in the user’s eyes. It then uses sophisticated software to determine what the user is looking at on the screen and translates it into individual letters and words.

Eventually the computerised voice – similar to the kind which helps Professor 
Hawking speak, could help her “talk” to her parents and sister Bea, 13.

“I am hoping we can choose the voice so it’s suitable for a little girl,” laughs Thea. “What would be incredible is if it could use Bea’s voice, but the technology might not be there for that. It will just be amazing to hear what she has to say.

“Greta is a really engaged girl, interested in what’s around her, she listens really well and wants to be involved in things. She’s feisty and bright.

“We’ve seen the impact the technology has had on other children, it’s really moving to see them start to 
communicate.

“We hope that she will reach a point where Greta can too. It’ll be incredible.”

n Visit the family’s justgiving page at http://www.justgiving.com/gretaeyegaze

sdick@edinburghnews.com