Would my girl boil alive?
Something was doing this to my daughter, and I was convinced I knew what...
Juggling a job, three kids, after-school clubs and a social life – every mum knows the struggle.
But it meant the days flew by, and when the weekend came, I could relax with my happy little family.
But then, in February 2017, all that seemed to change.
‘My face hurts, Mum,’ my second eldest, Alexa, 8, said one day.
She’d been having shooting pains that would stop her dead in her tracks. ‘It feels like an electric shock,’ she complained. Poor poppet. ‘It’s probably nothing,’ I promised.
But I took her to the doctor, where I was proved wrong.
Her doctor diagnosed her on the spot with something called trigeminal neuralgia (TN).
It’s a severe and sudden agony caused by the misfiring of nerves, sending pain signals
to the brain. It’s extremely rare, especially in someone of Alexa’s age.
The good news was that there was a treatment.
‘A course of strong painkillers to dull the nerves,’ her doctor explained.
‘If they ease the pain, it’s worth it,’ I’d smiled.
But over the next six weeks, Alexa became more sick.
It wasn’t just pain in her face any more.
It was now coursing through her body 24/7.
She could barely move, and rarely slept.
I didn’t sleep either. And something in my gut told me it was the medication doing this.
‘I think she’s having an allergic reaction,’ I explained to my hubby Lee, 31.
But when I told doctors my theory, they weren’t convinced.
Then, in March 2017, Alexa’s condition worsened.
I woke to the sound of her calling my name.
‘Mummy…’ she whispered by my bedside.
As my eyes adjusted, I reeled in shock at the sight of my daughter.
‘Alexa! What’s happened?’ I shouted as I moved to get a closer look.
Her face was puffy, eyes so swollen she could barely see, and her lips…huge and horribly blistered.
She couldn’t speak properly. Her lips too sore. This time,
Pain was coursing through her body 24/7
wouldn’t be told it was fine. I rushed Alexa to Colchester Hospital, where doctors admitted her for tests.
Everything came back clear, even the blood test for an allergic response in her body.
Yet her face told a very different story.
The hours ticked by as her eyes and mouth clamped shut.
I was becoming frantic, wanted to do anything I could to make her feel better.
‘Want Mummy to rub your feet?’ I’d asked.
She nodded and pointed her toes towards me.
But just as my fingers grazed the balls of her feet she screamed in agony.
Jumping up in shock, I gawped at the spot my hands had been seconds earlier.
Her skin had erupted in blisters at my touch.
The doctors still weren’t able to give us answers.
They suggested I take photos for them to send around to other consultants. I agreed. Thankfully, someone from Broomfield Burns Unit got in touch with some information.
Alexa was blue-lighted there, where staff washed her skin, wrapped her limbs in silver-lined bandages.
‘What are those for?’ I asked them.
‘Silver encourages new skin growth,’ a nurse explained. They knew so much about her condition, knew exactly
They wrapped her limbs in silver-lined bandages
what to do, I just stepped back and watched them work.
Then, when Alexa was finally settled, they told me what was wrong with her… Stevens-johnson syndrome. It’s a rare and serious disorder of the body that causes it to burn itself inside out. Alexa had suffered 65 per cent burns across her body. And the cause... An allergic reaction to her TN medication, causing her to boil from the inside out. A doctor explained, ‘If we hadn’t received that photo, Alexa would have died.’ Exhausted and drained, I dropped to my knees. Hearing just how close we’d come to losing my little girl, I broke down. Doctors placed her in a coma to allow her body a chance to recover.
Alexa stayed in hospital for six weeks while her skin healed.
Then, finally, we were able to bring her home.
The terrible thing about this condition is once it’s triggered, the symptoms never quite go away.
Now, Alexa chokes on her food, her lips blister often.
But she hasn’t let anything get her down.
She’s removed her bandages, and she’s told the doctors she will be catheter-free again one day. Her strength is remarkable. She’s on new medication for TN now, and she has eye drops to stop her going blind.
There are a million things we have to take into account. But Alexa is alive. And that’s the one thing I will never stop being grateful for.
Alexa was burning up before my eyes
Her mouth was full of blisters
Now: her strength is remarkable
I kept vigil, just wanting Alexa to feel better