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Louise Thomas
Editor
A 17-year-old girl who thought her tics had started due to a recent “nasty cold” suddenly had her life “put on hold” when she was left unable to walk or talk and suffering almost daily seizures.
Amy-Louise Beaumont, now 19, from Oswestry, in Shropshire, was a “very healthy” teenager, dreaming of university and a career as a human rights lawyer in October 2022, when she suddenly started experiencing tics and bodily twitches.
Just five days later, she was admitted to hospital unable to walk or talk and diagnosed with functional neurological disorder (FND) – a rare problem with how the brain receives and sends information to the rest of the body – and functional hyperkinetic movement disorder (FHMD), which can cause abnormal involuntary movements.
Amy-Louise’s life “completely changed” as the conditions cause brain fog, muscle spasms, tics and tremors, as well as seizures almost every day – sometimes up to six per day and each varying from five to 20 minutes.
Amy-Louise’s mother Julie, a 55-year-old clinical nurse specialist, and sister Lucy, a 23-year-old nurse, said she requires 24/7 care and the use of a wheelchair as she cannot walk far, and though her speech has partially returned it is often slurred and “similar to a stammer” but this can vary “hour to hour”.
The family have spent around £7,000 to cover equipment costs, such as a wheelchair, and they have used a £40,000 council grant to pay for necessary adaptations at home – but Lucy has now launched an £18,000 online fundraiser for a wheelchair lift to “change (her sister’s) life”.
Speaking about the impact of the diagnoses, Julie said “It has been absolutely life-changing.
“As a mum, when your children are growing up, they have a fall and you can do something about that… and when they’re feeling sick, you can give them Calpol, soothe them, and make them feel better.
“But this one, I can’t fix it, I can’t make it better. We’re having to adapt to these massive changes in our life, and all of these hopes, dreams, ideas, expectations and goalposts change completely.
“She has seizures almost every day, so you’re reliving that every day – and it’s a reminder that I can’t make it better for her, I can’t make it stop. We just have to ride that wave and that’s really hard.”
Lucy added: “If we can get Amy the lift, I think it would change her life and give her the life that she needs to have as a 19-year-old.”
According to the charity FND Hope UK, an estimated 50,000 to 100,000 people in the UK have FND – and it said many healthcare professionals have not even heard of it.
Prior to Amy-Louise’s diagnoses, Julie described her daughter as a “very healthy 17-year-old”, who was doing three A-levels at college with a view to studying law at university.
One Friday evening in October 2022, Amy-Louise returned home from college and started experiencing sudden “tics” – but given she was recovering from a “nasty cold”, the family assumed she was just run down.
The movements, tics, and twitches became “more pronounced and sustained” over the weekend and started affecting her sleep and mobility, causing one of her legs to give way.
After visiting her GP twice, Amy-Louise was referred to Royal Shrewsbury Hospital on the Wednesday – and after several scans and blood tests, she was diagnosed with FND and FHMD.
“Her symptoms by then, her mobility, she wasn’t able to walk,” Julie said.
“The movements, tics, shaking, and twitches were constant, so if she was trying to have a drink, her hand was going all over the place.
“Her head was spasming and it was absolutely awful and exhausting for her.”
During the 10-day stay at the hospital, Julie said Amy-Louise, who was “vulnerable and frightened”, started having her first seizures and she was given sedatives, antidepressants, and an anti-Parkinson’s drug.
However, the family said it was apparent that knowledge of FND was lacking, as many questions were left unanswered, and they were “discharged home with a commode and a physio appointment – and that was it”.
They described the diagnoses as “horrendous” and said the lack of external support and knowledge from healthcare professionals has been “eye-opening”.
Lucy said: “We’ve basically had to grieve the life Amy would have had and I’ve had to grieve my sister… and because it happened so quickly, it was traumatic.”
Given Amy-Louise did not have “full function of her legs” when she was discharged from hospital and her bedroom is on the third floor of the family home, Julie and Lucy knew she “needed help”.
Julie bought a wheelchair for Amy-Louise, which cost around £2,000, and they converted their ground-floor dining room into her new bedroom to help “make life functional for her”.
The mother of six said it took six months to get an occupational therapy referral for an assessment, and during this time she had to give up work to focus on caring for Amy-Louise full-time.
“By then, I was pretty much on my knees trying to work out how to get help, get the support,” Julie said.
Since October last year, the family have been supported by a personal assistant called Dom, who they described as “an angel” – but they said they have struggled to get answers from medical professionals.
Every morning, Julie and Lucy said they will assess Amy-Louise’s mood and her capabilities depending on her pain levels, fatigue, and how “slurred” her speech is.
She will often “go straight into her wheelchair” because she cannot walk far and has a foot drop – difficulty in lifting the front part of the foot – and her number of seizures and tics varies day to day.
The family said she “desperately wants to go out and do normal 19-year-old activities”, but there is no known cure and the only treatment is regular physiotherapy and cognitive behavioural therapy.
“I don’t think I’ve ever heard Amy say, ‘Why me?’ But she will say, ‘I’ve had enough, I’m fed up with this’,” Julie said.
With her lifestyle “limited” by her conditions, the family have done their utmost to support and care for Amy-Louise, spending around £7,000 of their own money on “basic” adaptations and equipment.
They were able to secure a £39,987 Major Adaptation Grant from Shropshire Council, which covered the cost of the installation of a wet room downstairs and other adaptations, but now they are fundraising for £18,000 to purchase a through-floor wheelchair lift.
This would allow Amy-Louise to move around the house independently with “dignity and ease” and sleep upstairs next to her family again, so she no longer feels alone.
Amy-Louise has decided to share her story publicly to “be that voice” for those who might not feel “brave enough” and to help raise more awareness of FND.
Julie said: “To have the lift and have that sense of normality – for Amy to have the opportunity to go to her bedroom when she chooses to and do that independently – it would be wonderful.”
Amy-Louise, who shared a statement via her sister Lucy, added: “I hope this will bring attention to FND so that people living with the condition do not feel so isolated and so that medical professionals can be more aware of the condition and have an opportunity to learn and understand FND.
“I am thankful to everyone who has donated so far as it will enable me to have a better quality of life and gain more independence.”
To find out more about the fundraiser, visit: gofundme.com/f/help-lift-amy-up.
Sheila Fryer, acting deputy chief operating officer at The Shrewsbury and Telford Hospital NHS Trust (SaTH), said: “We are unable to comment on individual cases, but we are committed to providing the best possible care to our patients and are sorry if any patient has felt this has not happened.
“We know the importance of effective communication to ensure patients feel understood and that their voices are heard and we are continuing to work with all teams to ensure this is embedded in everything we do.
“We encourage the family to contact our Patient Advice and Liaison Service (PALS), so we can offer support and look into the concerns raised.”
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