Amy Ironside Wood contracted glandular fever from her daughter Willow
What initially started as a simple cold in her young daughter has left a mother bedridden for the past six years.
Amy Ironside Wood contracted glandular fever from her daughter Willow, however the virus caused an “autoimmune cascade” that forced her to lie down for 22 hours a day. In addition to chronic fatigue, she has to wear a neck brace every time she stands, as the ligaments that hold her skull to her spine have been severely weakened.
Amy, 37, from Nottingham, started feeling unwell after coming home from a celebration trip with friends for her 31ststreet birthday. Willow, who was just 18 months old at the time, had contracted the virus, caused by the Epstein-Barr virus, at daycare, but she recovered after about a week. But Amy went abruptly downhill.
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Amy spends about 22 hours a day in bed.
She told a national newspaper: “I just wasn’t getting better and new symptoms were coming on. I just thought I had a bit of a cold. I didn’t even have a fever.”
Amy was suffering from severe fatigue, shortness of breath, and general weakness throughout her body ten days later. Within weeks, she was so exhausted that she could only do light activity for two hours a day, and she added that she hasn’t improved since.
“I literally went from going to the gym three times a week overnight to struggling to get out of bed,” Amy explained. “When Willow needed me at night when she was little, she literally had to drag me down the landing because she was too weak to stand up. I was like, what’s going on?”
His father indicated that he may be suffering from MS (myalgic encephalomyelitis) or chronic fatigue syndrome, which is usually caused by glandular fever. Amy was unfamiliar with the condition and she went to her GP for months for tests to rule out all other possibilities.
She said: “They have to rule everything out before they can consider me, but there’s no blood test, they just have to diagnose you with symptoms anyway. When they’ve checked all those boxes, they lump you into the ME basket.”
Amy, who previously ran an independent business selling denim through ASOS, said: “That’s hard because they know something about it, and they freely admit it, and there’s no treatment, they tell you to go home and go to bed “.
What quickly became apparent was that I was only part of the problem. The mother said that she began a research trip during her waking time.
“I was thinking what the hell am I going to do. I’m 31 years old, I have a little son, I can’t go to bed for the rest of my life,” he said.
Misfortune struck the family again when Amy’s husband, Nick, who became the sole breadwinner, was diagnosed with stage 3 melanoma.
Amy before her illness
He had had it before, discovering a lump near his ear under the skin just as he was about to celebrate 10 years clean. Doctors quickly removed the melanoma, followed by a year of immunotherapy therapy in 2022 to destroy any rogue cells.
With both fighting their own health battles, Amy and Nick had to rely on their parents to care for Willow. Further pressure built with Nick having to take months off work, leaving the couple financially “broken” without a steady income, reports mirror.
“It was very difficult last year,” Amy said. “Taking hits from both sides, it was hard work.”
During her research, Amy began following the journey of her MS partner, Jen Brea, on Twitter, who had also done a TedTalk on the subject. Similar to Amy, Jen had been diagnosed with MS while she was battling perplexing issues with her spine.
Ultimately, he underwent major spinal surgery, which put his MS into remission, indicating that the multisystem disease had a structural root cause.
Jen had been diagnosed with craniocervical instability and tethered cord syndrome. She underwent two major operations to correct these problems: a fusion surgery in which metal fuses the skull to the spine in the correct position and then a tethered cord release surgery to correct the spinal cord.
She created a Facebook group that explored structural spinal problems associated with MS, and Amy realized that her symptoms suggested that she would need the same treatment.
But first she needed to be evaluated, and there are a very limited number of doctors in the world who can do that.
Fortunately, users of the Facebook group had begun collecting information on neurosurgeons who had become specialists in the condition.
In February of last year, Amy and Nick traveled to Barcelona to see a doctor who confirmed that she had craniocervical instability, as well as atlantoaxial instability.
“Basically, this means my skull and cervical spine are not stable and this, in turn, is causing brainstem compression and general dysfunction,” he said.
Amy understands that the original virus caused an “autoimmune cascade” through her body, 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 moving on my spine instead of being very stable up there,” he said.
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She wears a special walking brace.
Her two treatment options are fusion surgery, like Jen; however, this is a major neurosurgery with complications, or a specialized stem cell procedure.
This also carries great risks.
Amy is currently being evaluated for umbilical cord syndrome, which would require additional surgery.
None of the treatments or assessments are available on the NHS. Even if you can scrape together enough cash, traveling abroad is a nightmare.
“I have to be in a wheelchair and I have to wear a neck brace to try to stabilize my skull and spine while I’m not lying down,” she said.
“I also have to reserve specialized equipment at the airport to help me. I need to find places to lie down, but at airports there are often none so I just have to lie down on the ground.”
“The problem is that you also end up with really hypersensitive senses when you have ME, so sound and touch make your condition worse.
“Being in a bright, noisy, busy environment makes me very sick. I have to wear ear protectors, an eye mask and basically huddle in a corner by myself until I take flight.
“Then I arrive and do the same on the other side, I can’t talk to anyone because it exhausts me. I can’t do anything, it’s like moving a corpse. in a wheelchair, he gets on the plane, is left alone and gets off the other side”.
If she opts for stem cell treatments, she’ll need to travel to the US, probably Colorado, which would mean a long-haul flight, and something Amy describes as a “difficult task.” But she is determined to do better, especially because of her husband and her daughter, who have been so supportive.
Amy said it feels like a “big burden” for them, as well as their parents. When she was asked about Willow, who is now eight and a half years old, her Amy began to cry.
“I will never get those years back. She will never be two, three, four, five again,” she said through tears.
Amy with her daughter Willow and her husband Nick
“I spent all those years lying on the couch trying to get through the day. You spend every ounce of energy trying to get through the day instead of enjoying your life, doing anything with it, making memories.”
“I don’t want his memories of me laying there helpless. It downplays your personality, when you’re really exhausted you don’t even have the energy to be funny, to make a joke, you just can’t be a Fuck,” Amy continued.
“When you have clinical levels of exhaustion, even though in my mind I have jokes to tell and I want to do impersonations, I want to play with her, I physically can’t do it because it makes me sick to spend that energy.
“I have to minimize everything and do the nitty-gritty of what needs to be done and that can take a lot of the joy out of everything.”
However, he said that Willow is very understanding and that he can’t hide anything from her. “I couldn’t hide the fact that mommy can’t take you to the park, mommy has to go to bed, I can’t go paint, I can’t take you swimming,” Amy explained.
“I had to be open with her about what was going on because there was just no hiding it.
“The last two years she’s been amazing, she’s so understanding, she tells people to shut up around me and brings them drinks. It’s sad because I don’t want her to have to take care of me, but she’s a little older now, she’s learned that It’s not all about her.
“Sometimes it has to be about other people. She understands that I’m not like everyone else. It’s given her a different perspective on what’s important. I’ll say we can’t afford vacations this year because mommy needs treatment, we have to pay the bills medical.
“She’ll say things like, ‘Your health is much more important than my happiness.’ I’m like, ‘Don’t, I’m going to cry.’
“She’s learning a good lesson from this, although it’s one I never wanted her to learn.”
You can help Amy raise £100,000 for treatment on her GoFundMe page here.