A FAMILY from Worcester are raising funds to buy equipment so their four-year-old girl, who has severe brain damage, can communicate.

The Evans family need special software, Eye Gaze, which will allow Elaina to communicate by controlling a cursor with her eyes, to use a computer – but it costs £9,000.

Elaina has a rare form of epilepsy, Dravet Syndrome, and her heart stopped beating for eight minutes when she was two years old, leaving her brain damaged.

She suffers frequent seizures, can't walk, and has issues with speech, sleeping and balance.

Her mum, Amanda, 38, said: “Elaina is a warrior and our inspiration. Elaina has been fighting – fighting to live, fighting to relearn skills that she once found so easy and fighting to get answers.”


Elaina first started having seizures at four months old and was diagnosed as epileptic. By the time she was two, she'd had 29 big seizures and two stays in intensive care – and then her heart stopped beating.

“Watching your child have no heartbeat is horrific," said Mrs Evans. "It was the longest eight minutes of my life. I will never get over what I saw that day. We were told Elaina might not live. Elaina’s life and ours had changed forever."

Elaina now has three to seven seizures a day, which can last up to 12 minutes.

Mrs Evans said: “It has been a massive change to our lives. From having two healthy children to having one child who runs around and another who needs 24-hour care.

“Elaina should be running around with her sister, Caitlin, driving us bonkers. She should have started swimming lessons and school last September.

“Elaina should not have to go through everything she does every day. Morning stretches, chest physio, being tube fed, relearning to eat puree, using specialist equipment to sit, stand and walk, trying so hard just to be able to hold a toy or look at something, constant medical appointments, learning to hold up her head, roll and sit, having people guess what she wants and she is trying to say.”

Despite all the struggles Elaina faces, her mum describes her as a happy girl: “She laughs, she loves her family and friends, she adores music, swimming, her dance class and being outdoors and going on holiday.”

A JustGiving page to raise £1,200 towards the cost of the Eye Gaze has been set up by family friend Ffi Llewellyn, with £700 donated so far.

The JustGiving page also shares Elaina’s progress and raises awareness of her condition. Visit bit.ly/2Yk0W4S


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