Mum reveals how daughter went from active 11-year-old to a recluse after being diagnosed with ME1st May 18 | Family
Libby is one of the youngest people in the UK to develop the chronic fatigure condition.
A mum has spoken out about her 11-year-old daughter’s heartbreaking loneliness, after chronic fatigue condition ME transformed her from a sport-loving livewire into a virtual recluse.
One of the youngest people in the country to be diagnosed with Myalgic Encephalomyelitis, or ME – which most commonly affects women aged between 20 and 40 – Libby Seath, from Chester, Cheshire, now finds simple tasks like teeth brushing exhausting.
Thought to have been triggered by glandular fever, the condition has left her almost housebound, according to her sports and leisure coordinator mum, Emma, 43, who said: “This has completely turned our lives upside down.”
She continued: “Libby loved sport and was always really busy, but now she can barely do anything. She’s too exhausted for school. Just leaving the house is too much for her.”
Just two years ago, Libby was an enthusiastic member of her local girls’ football team and loved swimming, but Emma and her Royal Mail traffic sampler husband Ian, 45, began noticing changes in her behaviour.
Used to her always being on the go – playing with her pals and her siblings, Katie, 13, Liam, nine and Ruby, six – her sudden tiredness immediately concerned them.
Emma recalled “We started to notice that she was exhausted all the time and the minute she sat down, she would fall asleep.
“It was May 2016 and it was coming up to half term, so we thought she just needed a break, but even after a few days off school, she seemed to be getting worse.”
Emma took Libby to the GP, who recommended she tried to get as much rest as possible, telling her to come back in June for a follow-up appointment.
In the meantime, Libby became so tired, she would fall asleep standing up and was struggling to concentrate at school.
As the summer holidays started, the doctor agreed to run some blood tests, to determine what was causing her fatigue, but they came back clear.
Referred to a paediatrician at the Countess of Chester Hospital, further blood tests that December showed that Libby had contracted glandular fever some time earlier, which had triggered ME.
Ongoing research is being conducted into the causes of ME, but it is believed that infections like glandular fever, caused by the Epstein-Barr virus, can spark prolonged fatigue.
Initially relieved to have a diagnosis, the family were soon heartbroken to discover the lack of treatment options for ME, or guidance on how long it would last.
Emma said: “We’ve never been able to put a time on it, as no one knows how long it will go on for. It’s difficult because Libby is much younger than most sufferers and we just have to take each day as it comes.”
Advised to limit her “high energy” hours to five a day, Libby’s parents soon found she was capable of little more than watching TV.
Emma continued: “For Libby, a high energy hour can be something as simple as watching a TV show. She doesn’t have to be doing much.
“She’s meant to spend the rest of the time not doing anything at all and that’s really hard for an 11-year-old, used to such an active lifestyle before.”
“This week, it’s her brother’s birthday and the excitement of thinking about that has completely tired her out,” she added.
“We can’t do anything as as a family now because just leaving the house exhausts her. She’s basically stuck in the house almost all the time.”
According to Action for ME, there are around 250,000 people in the UK with the condition, most of them being women aged between 20 and 40.
The age factor means that even self-help groups have little to offer Libby.
“We looked at local support groups, but most of the people there are much older than her,” Emma added. “She’s in a very different situation.
“She has joined online forums and there are a few other people her age, but they are all quite far away.”
She continued: “It’s difficult for her, as she isn’t able to go to school much right now. We aim for a few hours a week, but sometimes even that’s too much for her. All her friends have moved onto high school and it feels like she’s been left behind.”
Her heartbreaking isolation really hit home during the festive season, according to Emma.
She said: “At Christmas time, I realised that her brother and sisters were getting cards from all their classmates, but Libby only got two and they were from people she had spoken to on the forum.”
Still, despite her illness, Libby remains positive and is fundraising for Action for ME to help others with her condition.
Emma added: “She’s always been a thinker and wants to help people.
“Before she was ill, she was always trying to hold sales and things to raise money for Unicef.”
She added: “Now she’s set up a JustGiving page and got lots of our family to do sponsored stepathons to raise money. She has such an active mind, but she can only really do things online at the minute.”
To donate to Libby’s page, visit https://www.justgiving.com/fundraising/libby-seath
© Press Association 2018