If Luton mum Amanda Lowe could have just one wish, it would be to understand what her much-loved disabled daughter is thinking.
“It’s so difficult,” she says. “I want her to be really happy but I just don’t know what she’s feeling.”
Eleven-year-old Emily was born at Luton & Dunstable Hospital on December 21, 2004 after an emergency Caesarian.
Sundon Park Primary teacher Amanda and her husband, courier driver Neil Gay, 42, who live in Bancroft Road, settled into life as a happy little family. But just before Emily had her first birthday, they became concerned that she wasn’t able to sit up and took her to see a paediatrician.
The result was devastating – Emily was diagnosed with athetoid cerebral palsy (ACP). Her muscles are so weak she is unable to hold her own body weight.
She cannot walk, talk, sit, dress or feed herself and relies on her parents and Nana – Amanda’s mum Melanie – to care for her 24/7.
They have recently been told that Emily may not have ACP after all, but an undiagnosed movement disorder.
The little girl, who goes to Lady Zia Wernher School, also suffers from epilepsy, scoliosis, osteopenia, global delay and feeding difficulties.
Amanda, 39, says wistfully: “Sometimes when you see other children playing, you think ‘I wish Emily could do that.’ She has a nine-year-old brother Zac and he’s brilliant with her.
“Part of the disorder is a continual, uncontrollable tremor which along with her floppy, weak muscles, makes purposeful movement extremely difficult.”
The family recently went to an independent living show in Birmingham where Emily tried a specialised, highly versatile Snapdragon Powerchair.
Amanda says: “She absolutely loved it. It will improve her quality of life immeasurably and allow her some independence.
“There’s a lot of guesswork for us all about whether Emily wants something she can’t communicate. It would facilitate this by enabling her to move towards what she wants.”
The chair costs £22,000 and the family are holding a fundraising event at Cosgrove Caravan Park on Saturday, July 30. They also have a GoFundMe page which has already raised £1,600.
Amanda explains: “It’s not a decision we made lightly. We needed to raise money quickly and efficiently and the website allowed us to create a platform to organise the campaign and get the wider community involved.”
> If you’d like to help secure a Snapdragon chair for Emily, visit www.gofundme.com/Powerchair4Emily