Girl, 13, 'locked' inside own body by incurable condition diagnosed after she did one thing as a child
Topics: GoFundMe, UK News, Health, Parenting, Technology
Poppy Bilderbeck
Featured Image Credit: PA Real Life
Topics: GoFundMe, UK News, Health, Parenting, Technology
A mom has opened up about her daughter's experience with a rare condition which has left her 'locked' inside her own body.
Up until Lucy Glenn was 18 months old, she'd been beginning to walk and talk as expected and was 'completely healthy', until 'one day' she woke up and began acting completely 'different'.
Lucy's mom Katherine McCready recalled her daughter stopping playing with her toys and beginning to 'pull her hair out of her head out of stress'.
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And when her daughter 'managed to pull all her hair out,' Katherine rushed her to the doctor and 'a few months later' was told Lucy has Rett syndrome.
Rett syndrome is 'a rare genetic neurological and developmental disorder that affects the way the brain develops,' Mayo Clinic explains - and while 'potential treatments' are being studied, it currently has no cure.
"This disorder causes a progressive loss of motor skills and language. Rett syndrome primarily affects females," it continues, noting 'over time' children diagnosed with the condition 'have increasing problems with the use of muscles that control movement, coordination and communication,' alongside experiencing 'seizures and intellectual disabilities'.
Katherine explained to PA that she was told Lucy 'will never walk, never talk and won't live beyond 19'.
"Those words will always stay in my head, it felt like my world just fell apart," she added.
Since her diagnosis, now aged 13, Lucy lives on a strict diet of blended food, having developed 'severe food intolerances' too.
She relies on a wheelchair and standing frames, alongside a list of medications. She's also lost her ability to speak - her mom reflecting she's now 'locked in there'.
However, Katherine and her partner have remained determined to help Lucy live her life to the fullest - taking her to concerts, on holiday and camping - alongside raising money via a GoFundMe for Lucy to have her own Eye Gaze device.
The device looks like a tablet but instead of hands navigating the screen, it's controlled by eye movement.
Katherine explained: "Lucy is a person who is locked in there. At the moment, she gets frustrated when a song comes on she doesn’t like so we’re always ready with the remote.
"Or if she wants a shower, for example, she will look towards the stair lift.
"But when she is trained with the Eye Gaze, she will be able to communicate what she wants by forming sentences with her eyes."
The mom resolved: "This will give her so much independence, a voice and an opinion which I think is going to help her massively."
You can donate to Lucy's GoFundMe here.