Would my girl boil alive?

Some­thing was do­ing this to my daugh­ter, and I was con­vinced I knew what...

Chat - - Contents - Kazmira Juck­iewicz-caspell,

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

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