Real life: My girl has one of the rarest medical conditions on the planet but she won’t let it slow her down

Sharyn Morris, 56, Balga, WA, shares her true life story;

As soon as I glimpsed the newborn bub, I couldn’t help but take her in my arms for a cuddle.

“You poor, sweet little angel,” I sighed.

Doctors told me baby Symmie’s birth had been far from smooth.

She had SCALP syndrome, a rare and complex skin disease that impacts the nervous system.

Much of her body was covered in a variety of skin lesions that could become cancerous, and a large black mole ran all the way down the side of her face.

My legs trembled learning that part of Symmie’s brain was missing, while there were already multiple tumours on the rest of her brain.

Non-cancerous growths had spread over her eyes and needed to be removed regularly.

“She’ll only have a year to live, at best,” a doctor said.

Why is life so cruel? I wondered, fighting back tears.

I’d flown down to Perth from my home in Fitzroy Crossing to support Symmie’s birth mother, a long-time friend who sadly couldn’t cope with dealing with such a sick baby.

Child protection services arrived at the hospital soon after.

“What’s going to happen to Symmie?” I asked.

“We’ll take her,” one officer said.

I was a mother to three children, Belinda, 31, Kerry, 30, and Taryon, 29, and had six grandkids – I’d never want them to be handed over to strangers, and couldn’t bear the thought of that happening to Symmie either.

“No,” I told them. “I’ll look after her.”

I’d lost my husband to cancer three years earlier, so when I told my kids about Symmie’s situation, they were concerned about me going through loss all over again.

“Won’t it break your heart if she passes away?” Kerry asked.

But that was the last thing on my mind: this little girl had no one, and I couldn’t let it stay that way.

Symmie spent the next six weeks in hospital, being monitored closely, before I could take her home.

By now, docs were convinced she was the only person in Australia with this condition, which would make it hard to find the expert care she needed.

They’d also discovered she had rickets, was legally blind, mute and hard of hearing.

On top of this, she had epilepsy and suffered global developmental delay.

The odds were certainly against her, but I refused to give up.

I knew from all my years as a mum that love and cuddles could work miracles, so I made up lullabies and sang to Symmie just as I did to my grandkids.

“I promise to always be here for you,” I told her. “I’m your mum.”

My kids held Symmie and nursed her just like she was their sister.

Loud, sudden noises could cause her to have a seizure, so I kept Symmie’s room dark and quiet.

Every three months, we flew back to Perth for check-ups.

The doctor was surprised that Symmie was doing well and had gained weight.

By her first birthday, she managed to sit up and roll over.

“She really is a miracle,” the doctor marvelled. “I take back what I said earlier – she’s here for a long time.”

After that, Symmie’s seizures got under control, but with such a low immunity, she often caught a cold or fever and had to go back to hospital.

When Symmie was three, doctors advised us to move to Perth for better medical care.

It wasn’t an easy decision to make.

My kids and job running a taxi service were in Fitzroy Crossing, but with everyone’s encouragement, I decided to pack my bags.

“This is what Symmie needs,” Belinda said. “Of course we’ll miss you, Mum, but we’re grown up and can look after ourselves.”

It turned out to be a great move for us: I met and fell in love with a caring man named Aaron, who doted on Symmie as well.

In Perth, Symmie thrived. I took her to the local swimming pool and she loved it.

Swimming isn’t possible for her, but she blew me bubbles and had the biggest smile as we splashed around together.

At five years old, she even began forming words.

“Mum, Mum,” she told me.

Sometimes, if I’m watching the news, she changes the TV to YouTube to play her nursery rhymes.

“You’re lucky I love you,” I laugh.

I’m teaching her to clap and tap her foot now.

The moment she wakes up, she uses her walker to turn on every light in the house – but switches off the kitchen light.

I don’t know why she does that, but it shows me her big personality.

She gets what she wants and is a stubborn and determined child.

When she sits on the breakfast table, she demands I feed her.

“No, no,” she says to any food that’s gooey in texture.

She doesn’t like getting her hands dirty, and can eat cheese and biscuits by herself.

When my 14-year-old granddaughter, Talia, comes to visit, Symmie’s face lights up.

“Tah-Tah,” she says, and they play together on the swing all day.

I can spend hours watching Symmie cuddle up with her Elmo toys, or listen to her and Aaron zooming round the floor with her cars.

“Beep, beep,” Symmie chirps.

When people tell me I’m a hero, I feel embarrassed.

Anyone would have done what I did.

Doctors don’t know how long Symmie has, but as long as we’re together, I’ll give her the best life possible.