Emily Stokes, 20, shares her true life story:
My eyes shot open as agonising pain surged through me.
What’s happening? I panicked, trying to sit up in bed.
I tried to yell, but my mouth wouldn’t open.
My entire body had seized up, stiff as a board. I couldn’t move a thing.
Then I vomited from the pain and it ran down my face and neck.
I coughed and spluttered, terrified I’d choke.
My bedroom door swung open.
“Why aren’t you getting ready for sch…” Dad began.
His mouth dropped open in shock when he saw me, his 16-year-old daughter, frozen and covered in vomit.
He raced over and quickly called an ambulance.
At hospital, doctors injected steroids, antibiotics and strong pain relief while they ran tests.
It took three agonising days for the medication to kick in enough for me to move and talk properly again.
“What’s wrong with me?” I sobbed.
The doctor said I had an autoimmune disease, but my symptoms didn’t match any particular condition so they’d need to run more tests.
Two more weeks passed, but still they had no idea what had happened.
I was finally discharged a month later with a range of medications. By then I was feeling mostly okay.
Emily Stokes
A few months later, I was at my waitressing job when I started limping.
By the end of my shift I could barely walk.
“It’s happening again,” I sobbed to Mum when I made it home.
I hoped my pills would stop a full-blown attack, but the next morning, I woke in agony and my entire body had seized up.
Doctors trialled more drugs, but none worked for long.
Sometimes, it got so bad I had to use a wheelchair.
My best friend Jordan became my hero.
He helped me to the toilet when I couldn’t move properly and cut up my food if I struggled to grip cutlery.
He helped me forget about my illness whenever we chatted, and I realised how special he made me feel.
That was the start of our relationship.
But my condition wasn’t improving.
I was forced to drop out of school at 17, then I moved in with Jordan and he became my full-time carer.
I hated not being able to even shower myself, but Jordan made me feel loved no matter what.
Doctors eventually worked out my white blood cells were causing inflammation in my joints and gave me chemo tablets to try and stop it.
But there was a catch. I’d never be able to have children.
I felt so torn.
I’d always planned to have a family one day, but I was also desperate for this nightmare to end.
I took the tablets and soon afterwards I finally had an answer to what had caused all this.
I had Yao syndrome, an incurable auto-inflammatory disease.
Less than 100 people in the world had it, and none had ever conceived a child.
My heart filled with sorrow.
A year later, I noticed my period was late.
I knew it couldn’t be a baby, so I went to the doctor, worried.
Her eyes widened when she saw the results.
“You’re pregnant!” she said.
I shook my head.
“No… no, that’s impossible,” I stammered.
But, against huge odds, Jordan and I were having a [miracle baby](https://www.nowtolove.com.au/news/latest-news/mary-coustas-little-miracle-jamie-now-3-37562.
After the news sank in we were both so excited.
I called my specialist to discuss which of my medications were safe, but he paused.
“I’m sorry, Emily, but it’s very likely you’ll miscarry,” he said.
I tried to speak as my world crashed down.
I felt my tummy and cried at the thought that I’d never get to cuddle my baby.
He explained that the chemo tablets would poison the baby, but if I stopped taking them, I’d have another attack, which would kill our baby anyway.
Jordan held me as we both wept.
Each morning I woke expecting to find blood but the weeks passed slowly and my bump continued to grow.
At 12 weeks, my doctor suggested I terminate the pregnancy because the baby was probably malformed.
“This baby’s meant to be,” I choked and Jordan agreed.
At 33 weeks, I woke in the middle of the night to my waters breaking.
On the maternity ward, Jordan clutched my hand through each contraction.
Fifteen hours later, we met our baby girl, Charlie.
With a mop of white-blonde hair and weighing just over 2kg, she was small but perfect.
She was completely healthy.
We brought her home three weeks later and since then, life has been amazing.
I still have chemo and it seems to be working.
For the first time in four years, I’m pain-free and I no longer rely on a wheelchair.
I’ve been through so much pain, but my miracle baby has made it all worthwhile.
