‘Healthy’ girl left ‘locked inside her body’ by incurable condition
A mother has revealed how her seemingly healthy daughter was diagnosed with a rare incurable condition after she noticed her start pulling her hair out as a baby.
Lucy Glenn, from Portsmouth, was learning to walk and talk as normal when her behaviour suddenly changed, her mother Katherine McCready, 31, said.
The 18-month-old, who appeared “completely healthy”, stopped playing with her toys, would sit in the corner facing the wall and began pulling out her hair due to stress.
Doctors at Queen Alexandra Hospital diagnosed Lucy with Rett syndrome, a rare genetic condition impacting brain development and leading to severe physical and mental disability.
What began as subtle changes in behaviour quickly escalated and now 13, Lucy is no longer able to walk or talk and requires 24-hour care, trapped in a body that cannot do what the brain tells it to.
To help Lucy communicate, Katherine and her partner, Dan, are fundraising for Eye Gaze technology. This innovative system will allow Lucy to interact with the world using her eyes, offering a vital link to her thoughts and feelings.
“Lucy developed completely normally until one day she woke up and something was different, but I didn’t know what,” Katherine said.
“She managed to pull all her hair out of her head out of stress, so I rushed her to the doctor.
“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.”
Katherine said her daughter had a healthy birth, arriving 17 days late, and developed normally until 18 months old.
She had learnt how to say basic words and was close to walking when her behaviour took a turn.
Katherine said she rushed Lucy to hospital and was referred to a paediatrician after she pulled out all of her hair in distress.
“She was sent for a blood test and my family started to drop hints that they were concerned,” Katherine said.
“We didn’t know any signs to look out for and I was in denial about how serious it was.”
A week before Lucy’s second birthday, doctors told Katherine her daughter had Rett syndrome, a condition affecting one in 10,000 girls born each year according to the NHS, and would not live beyond her teenage years.
“It was awful,” Katherine said.
“I was mourning for Lucy’s life, for my life, scared of what was to come.”
Overtime, Lucy regressed and lost all the skills she had developed as a toddler.
At the age of four, she had to have a feeding tube inserted, and now lives on a strict blended food diet to help combat reflux and constipation.
“She has severe food intolerances where even a bread crumb will make her severely ill for two days, so we have to be really careful,” Katherine said.
Lucy now relies on a wheelchair and needs help with every aspect of her life, but that doesn’t hold the family back.
Katherine and Dan, who is not Lucy’s biological father but has been with Katherine since Lucy was five, take the 13-year-old on holidays, camping and to concerts.
The family even go to festivals, travelling in a van full of Lucy’s equipment 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 said.
“Lucy absolutely loves music, especially Ed Sheeran and Harry Styles.”
Katherine is fighting for Lucy to have her own Eye Gaze, which will enable her to communicate with the outside world and do more of the things she loves.
The device, which costs £10,200, works by tracking Lucy’s eye movements and correlating them with information and a keyboard on a smart screen.
With support and training, Katherine hopes her daughter will be able to use the technology to talk with her eyes by constructing sentences via eye pointing to words and symbols.
“Lucy is a person who is locked in there,” Katherine said.
“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.
“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.”
Lucy is not eligible to receive an Eye Gaze device from any of the few charities, non-government funded, that offer it.
Determined to give Lucy a voice with the device, the family launched a GoFundMe page and has so far raised £7,642 of their £10,000 target.
“Lucy is such an infectious, happy, loving person and I’m so proud and so grateful for her,” Katherine said.
“We know if she is in a good mood if there are lots of smiles or in a bad mood if she is crying.
“But this will give her so much independence, a voice and an opinion which I think is going to help her massively.
“The possibilities are endless.”
To donate to Lucy visit her GoFundMe.
