Mum bedridden for six years after catching daughter’s ‘chilly’

What initially started as merely catching a chilly from her child daughter prompted a mom to be left bedridden for the final six years.

Amy Ironside Wood caught Glandular fever from daughter Willow, nevertheless the virus prompted an “autoimmune cascade” which left her having to lie down for 22 hours a day. Alongside the power fatigue, she has to put on a neck brace at any time when she is on her ft because the ligaments holding her cranium to her backbone have been severely weakened.

Amy, 37, from Nottingham, started feeling unwell after getting residence from a celebratory journey away with associates for her 31^st birthday.  Willow, simply 18 months outdated on the time, had caught the bug – attributable to the Epstein-Barr virus – at nursery however bought effectively once more after round per week.  But Amy went steeply downhill.

Read extra: Double tragedy after grief-stricken mum dies just weeks after her son

She instructed a nationwide newspaper: “I just wasn’t getting any better and new symptoms were coming up.  I’d just thought I had a little cold. I didn’t even have a fever.”

Amy suffered from extreme fatigue, breathlessness, and a normal weak spot all through her physique ten days in.  Within weeks she was so vitality drained she may solely do mild exercise for 2 hours a day, and has added that she has not bought any higher since.

“I literally went overnight from going to the gym three times a week to struggling to get out of bed,” Amy defined.  “When Willow needed me in the night when she was little, I’d literally have to crawl across the landing because I was too weak to stand up.  I was just like, what is happening?”

Her father indicated that she could also be affected by ME (Myalgic encephalomyelitis) or power fatigue syndrome, which is normally attributable to Glandular fever.  Amy was unfamiliar with the situation, and went to her GP for months for exams to eradicate all different prospects.

She stated: “They have to rule everything out before they can consider ME, but there’s no blood test, they just have to diagnose you on symptoms, anyway.  When they’ve ticked all those boxes, they lump you in the ME basket.”

Amy, who beforehand ran an unbiased enterprise promoting denim clothes by way of ASOS, stated: “That’s difficult because they know anything about it – and they freely admit that – and there’s no treatment, they tell you to go home and go to bed.”

What turned shortly blatant was ME was solely a part of the issue.  The mum stated she started a analysis journey throughout her waking time.

“I was thinking what the **** am I going to do?  I’m 31, I’ve got a little kid, I can’t just go to bed for the rest of my life,” she stated.

The household have been as soon as once more struck with misfortune when Amy’s husband Nick – who turned the one supply of revenue – was identified with stage 3 melanoma.

He had suffered from it earlier than, discovering a lump close to his ear underneath the pores and skin simply as he was about to have fun 10 years all clear. The melanoma was eliminated by docs shortly, which was adopted by a yr’s price of immunotherapy remedy in 2022 to destroy any rogue cells.

With each of them preventing by way of their very own well being battles, Amy and Nick needed to depend on her dad and mom to look after Willow.  Further strain piled up with Nick having to take months off of labor, leaving the couple financially “ruined” with out a regular revenue, stories the Mirror. 

“It was very trying last year,” stated Amy. “Getting hit from both sides, it was a slog.”

During her analysis Amy started following fellow ME affected person Jen Brea’s journey on Twitter, who had additionally performed a TedTalk on the subject.  Similarly to Amy, Jen had been identified with ME whereas preventing puzzling points together with her backbone.

Ultimately she had main spinal surgical procedure, which put her ME into remission, indicating the multi-systematic sickness had a structural root trigger.

Jen had been identified with Craniocervical Instability and tethered wire syndrome. She had two main operations to appropriate these points – a fusion surgical procedure the place steel fuses the cranium to the backbone within the appropriate place after which a tethered wire launch surgical procedure to appropriate her spinal wire.

She arrange a Facebook group that explored the structural spinal points which might be linked with ME and Amy realised her signs advised she would want the identical therapy.

But first she wanted to be assessed – and there are a really restricted quantity of docs on the planet who can do it.

Luckily, the Facebook group customers had began amassing details about neurosurgeons who had develop into specialists within the situation.

In February final yr, Amy and Nick travelled to Barcelona to see a health care provider who confirmed she had craniocervical instability – in addition to atlantoaxial instability.

“This basically means that my skull and cervical spine isn’t stable and this is in turn causing brain stem compression and widespread dysfunction,” she stated.

Amy understands that the unique virus prompted an “autoimmune cascade” by way of her physique, degrading her connective tissue.

“This connective tissue damage has caused the ligaments that hold my skull in place to become lax, therefore my skull is shifting on my spine as opposed to being nicely stable up there,” she stated.

Her two choices for therapy are fusion surgical procedure, like Jen – nevertheless, that is main neurosurgery with issues – or a specialist stem cell process.

This additionally comes with main dangers.

Amy is at the moment being evaluated for tethered Cord syndrome – which might require additional surgical procedure.

None of the remedies or assessments can be found on the NHS.  Even if she will increase sufficient money, travelling overseas is a nightmare.

“I have to go in a wheelchair and I have to wear a neck brace to try to stabilise my skull and my spine while I’m not laid down,” she stated.

“I also have to book specialist equipment at the airport so they put me through. I need to find places to lie down but in airports often there isn’t so I have to just lie down on the floor.

“The drawback is you additionally find yourself with actually oversensitive senses whenever you’ve bought ME, so sound and contact make your situation worse.

“Being in a bright, loud, busy environment, it makes me so ill. I have to take ear defenders, an eye mask, and I have to basically curl up in a corner on my own until I get on the flight.

“Then I get there and do the identical the opposite facet, I can’t speak to anyone as a result of it exhausts me. I can’t do something, it’s like shifting a lifeless physique. I’ve to be laid down on the ground, popped in a wheelchair, placed on the plane, left alone and get off the opposite facet.”

If she opts for the stem cell treatments she would need to travel to the US – likely Colorado, which would mean a long-haul flight, and something Amy describes as a “tall order”.  But she’s determined to get better, particularly for her husband and daughter, who have shown her so much support.

Amy said she feels like a “enormous burden” on them, as well as her parents.  Asked about Willow, who is now eight-and-a-half, Amy began to cry.

“I’ll by no means get these years again. She won’t ever be two, three, 4, 5 once more,” she said through tears.

“I spent all these years laying on the couch attempting to get by way of the day. You spend each ounce of vitality attempting to get by way of the day fairly than placing any enjoyment into her life, doing something together with her, making any recollections.

“I don’t want her memories of me laying down and helpless. It minimises your personality, when you’re really exhausted you don’t even have the energy to be fun, to crack a joke, you just can’t be a***d,” Amy continued.

“When you have clinical levels of exhaustion, even though in my mind I have jokes to tell and I want to do impressions, want to mess around with her, I physically can’t do it because it makes me ill to expend that energy.

“I’ve to simply minimise the whole lot and do the necessities of what must be performed and that may take quite a lot of pleasure out of the whole lot.”

However, she said Willow is very understanding and she can’t hide anything from her.  “I couldn’t cover the truth that Mummy can’t take you to the park, mummy’s bought to lie down, I can’t go portray, I can’t take you swimming,” Amy explained.

“I needed to be open together with her about what’s happening as a result of there was simply no strategy to cover it.

“The last couple of years she’s been amazing, she’s so understanding, she’ll tell people to be quiet around me and bring people drinks. It’s sad because I don’t want her to have to look after me, but now she is a bit older, she’s learned that not everything is about her.

“Sometimes it needs to be about different folks. She understands I’m not like anyone else. It’s given her a special perspective on what’s essential. I’ll say we are able to’t afford holidays this yr as a result of Mummy wants therapy, we have to pay for medical payments.

“She’ll say things like ‘your health is much more important than my happiness’. I think, ‘don’t, I’ll cry’.

“She’s studying lesson from this, despite the fact that it’s one I by no means needed her to be taught.”

You may also help Amy increase £100,000 for therapy at her GoFundMe web page here.