Lucy Glenn, 13, was a happy healthy baby until one symptom led to a diagnosis of a rare genetic disorder that impacts brain development. Now she’s a ‘prisoner’ in her own body
Lucy Glenn was a healthy, happy baby before her mother spotted a worrying change in behaviour that changed their lives forever.
Now 13, the teen has a rare genetic diagnosis that means she’s trapped within her own body, all after her mum saw one unusual symptom.
Her mother has opened up about grappling with the devastating reality that her beloved daughter won’t live beyond 19, while recalling the moment she found out about Lucy’s condition. Katherine McCready, 31, from Cosham, Portsmouth, explained that Lucy was born healthy, albeit 17 days overdue, and developed normally up until the age of 18 months.
Despite learning to walk and talk normally, little Lucy, who seemed “completely healthy”, suddenly stopped playing with her toys, sat facing the wall in a corner, and began pulling out her hair due to stress. “Lucy developed completely normally until one day she woke up and something was different, but I didn’t know what,” Katherine, who operates a garden maintenance business, said. “She managed to pull all her hair out of her head out of stress, so I rushed her to the doctor.”
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“She was sent for a blood test and my family started to drop hints that they were concerned. A few months later, we were told Lucy has Rett syndrome, that she 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,” the heartbroken mum shared.
The devastating diagnosis of the rare genetic disorder that impacts brain development, leading to severe mental and physical disability, came just before Lucy’s second birthday. “It was awful,” Katherine confessed, expressing grief for both Lucy’s future and her own, fraught with fear for what lay ahead. The NHS states this condition affects about one in 10,000 girls born each year and tragically, Lucy wasn’t expected to live beyond her teenage years.
As time progressed, Lucy regressed, losing the abilities she’d gained as a toddler. By the age of four, she needed a feeding tube and now adheres to a specific blended food diet to manage reflux and constipation issues. “She has severe food intolerances where even a breadcrumb will make her severely ill for two days, so we have to be really careful,” Katherine said.
Now aged 13, Lucy is unable to walk or talk, is reliant on a wheelchair and needs round-the-clock care – imprisoned in a body that fails to respond to her brain’s commands. Katherine and her partner Dan, 33, who has been a father figure to Lucy since she was five despite not being her biological dad, regularly take the 13 year old on holidays, camping trips and to concerts. The family even attend festivals, journeying in a van packed with Lucy’s necessities including two wheelchairs, a standing frame, medication, feeding tubes and emergency supplies.
“People think we’re a bit mad as we have to take a van-load of equipment and medical stuff, but we go for it and make as many memories as we can,” Katherine shared. “Lucy absolutely loves music, especially Ed Sheeran and Harry Styles.”
Katherine and Dan are currently raising funds for Eye Gaze technology for Lucy, which will enable her to communicate using her eyes and engage more in activities she enjoys. Priced at £10,200, the Eye Gaze operates by tracking Lucy’s eye movements and linking them with data and a keyboard on a smart screen. With adequate support and training, Katherine is hopeful that her daughter will be able to use this technology to express herself by forming sentences through eye pointing to words and symbols.
“Lucy is a person who is locked in there,” Katherine expressed. “At present, she gets frustrated when a song she doesn’t like starts playing, so we’re always ready with the remote. Or if she wants a shower, for instance, she will look towards the stair lift. But once she is trained with the Eye Gaze, she will be able to communicate what she wants by forming sentences with her eyes.
“It can also be connected to smart devices which means she could turn off the lights and choose her own music and programmes on Alexa or on the TV.” Unfortunately, Lucy doesn’t qualify for an Eye Gaze device from any of the limited charities that provide it without government funding. In a bid to secure this life-changing technology for Lucy, her family has set up a GoFundMe page, which has impressively raised £7,642 towards their £10,000 goal.
“Lucy is such an infectious, happy, loving person and I’m so proud and so grateful for her,” her mother Katherine expressed with admiration. She explained how they currently understand Lucy’s mood: “We know if she is in a good mood if there are lots of smiles or in a bad mood if she is crying.”
Katherine is hopeful about the difference the device will make, saying: “But this will give her so much independence, a voice and an opinion which I think is going to help her massively.” She concluded with optimism: “The possibilities are endless.”
To support Lucy’s journey to finding her voice, donations can be made at: www.gofundme.com/f/please-help-us-give-lucy-a-voice.
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