Helen's Story

“Without the ACE Centre none of what we’ve achieved with Helen would have been possible,” says Helen's mum Sandra watching her 11 year-old daughter Helen fire off another email to one of her friends.

Helen, shown on the left with her brother, suffered a major brain trauma at the age of seven months and as a result she has no balance, cannot sit unaided or walk, has extremely limited use of her limbs and speech is very difficult. She's entirely dependent on others for her every need. But Helen also has normal intelligence.

Communication was going to be an immense challenge, but Helen never stopped trying. At the age of two she was already using her eyes to choose between items. By the time she was nine, she could understand how to use sophisticated software but the only independent access to her computer was by using a switch. Helen tried every possible shape, size, colour, position, and combination of switches, but all to no avail, and her parents spilt many tears watching her struggle.

In July 2005 Helen, her parents and her team of carers and professionals arrived at the ACE Centre for an assessment. During the day Helen was asked if she would like to try out an experimental computer system that was part of a research project and still under development. It was operated by using eye movement alone.

This immediately took Helen’s mother Sandra back several years earlier when she had gatecrashed a special needs teachers event in London. Feeling slightly foolish, she had asked everyone if there was such a device as an eye control switch, but there was nothing at all. ‘There needs to be a reliable on-off movement to make any of the available software work.’ she was told. This was the one crucial thing that Helen didn’t have.

Six years later at the assessment, the family sensed hope and immediately signed up to the research project. “We understood from the beginning that it might not work for Helen, that it was not part of her assessment and it didn’t mean we would get such a system. But it was a wonderful privilege just to be involved at the cutting edge of computer science – and I no longer felt stupid!” said Sandra.

There was discernable excitement in the room the first time Helen tried the eye-gaze computer, and before long she was beginning to control simple software. For once, Sandra could see a way forward: “We knew were on to something special.” she explained.

Over the next couple of years, the ACE Centre was able to loan the eye-gaze computer (shown left) to Helen’s school for periods of two to three weeks at a time. With the help and support of her teaching assistant and the IT specialist at her local education authority, Helen started by simply ‘playing around’ with letters and quickly moved on to writing sentences – initially using set phrases and then through a form of predictive text. “I never thought that she would be able to use the computer by herself, but this was completely changing her life.” said Sandra.

So extraordinary was her success that in 2007 the local education authority granted Helen funding for her own eye gaze computer. We understand that she is the first child in the country to receive such funding, and we hope she will be the first of many for whom this very special computer is the only option.

The final word must go to Helen who wrote the following with her eyes independently for the first time: "I'm doing eye gaze which means I use my eyes to control the mouse and do my work on my own for once in my life."

Last updated: 10/03/10