Kerry Tognella, 47, Toowoomba, Qld
As we walked through the supermarket, my daughter skipped down the aisles.
‘Good morning, Angelina,’ the cashier waved. ‘How are you today?’
‘Very well, thank you. How are you?’ Angelina replied happily and my heart swelled with pride.
Beautiful Angelina, whose name means ‘angel from heaven’, has been through a lot in her five years.
Despite enduring more than 35 operations and constant stares from strangers, she’s rarely without a smile.
As a mother of six, I hadn’t expected to fall pregnant with Angelina when I did.
My husband Leo, 53, and I knew from my first scan that something was wrong.
Doctors couldn’t see her hands and feet properly and warned us she might have craniosynostosis, as her skull appeared to be growing at an abnormal rate.
‘It could cause severe mental and physical disabilities,’ one said.
I was 19 weeks along and we were devastated by the news, but terminating the pregnancy wasn’t an option for us.
‘We’ll face whatever comes our way,’ I told the doctor, knowing Leo and I could tackle anything together.
With our other kids, Joel, now 30, Victor, 24, Preston, 23, Siobhan, 21, Abrianna, 13, and Leonard, 10, our seventh was a welcome addition.
When she arrived, our daughter struggled to breathe.
Her head was larger than normal and her trachea hadn’t formed properly so she wasn’t able to feed.
Doctors fitted her with tubes to provide food and oxygen.
Each day we were filled with terror and relief as potential disabilities were considered and ruled out.
She was four days old when Leo and I decided to name her Angelina. ‘She’s our angel from heaven,’ I said.
It was heartbreaking to see her suffering, but she’d come to us for a reason and we resolved to do everything we could to give her the very best care.
Angelina was still covered in tubes when we took her home eight weeks later and we weren’t any closer to knowing what was wrong.
Her head was clearly larger than normal and at first we covered it with a bonnet and avoided going out.
Finally, when Angelina was nine months old, we received a diagnosis.
‘She has a very rare genetic condition called Crouzon syndrome,’ the doctor said.
He explained the condition is characterised by the premature fusion of certain skull bones, preventing the skull from growing normally and affecting the shape of her head and face.
Just 16 children in every million are diagnosed with the disorder.
Leo and I looked at each other in confusion. Neither of us had heard of it.
The news was devastating, but we were relieved to finally have a name for Angelina’s condition.
‘We can operate to reconstruct her bones,’ the doctor explained.
So our little bub was wheeled away for a gruelling 12-hour surgery.
Thankfully, it was a success but Angelina still struggled for air. She also had congenital tracheal stenosis, which meant her trachea was rigid and narrow, making it difficult for her to breathe.
Any pressure on it could end her precious life.
We kept Angelina on a feeding tube until she was three, when she got a Mic-Key button to take the tube directly into her tummy.
Unable to eat solids, she hasn’t gained weight as normal, which has further slowed her development.
Now Angelina is six and she’s reached 107 centimetres, an average height for her age, but her 19 kilogram weight is well below what it should be.
As she grows, she’ll continue to need surgery and when she is older she’ll have another operation to fix her trachea.
Being so tiny, it takes her weeks to recover afterwards.
Incredibly, Angelina doesn’t let these hurdles dampen her happiness. Sometimes her caring heart seems too big for her tiny frame.
Our little girl doesn’t know any other way to respond than with a huge grin. And her smile spreads to everyone around her.
‘See how gorgeous and beautiful you are,’ I say to her.
‘Like a princess,’ she replies.
Her favourite colour is pink and she loves animals but unfortunately her trachea is just too delicate for me to let her out of my sight.
Luckily she has her siblings to play with at home and computer games that keep her entertained.
Last year Angelina started school and although I stay by her side, her classmates all love her.
She’s now learning her numbers and letters but the more time I spend with our amazing daughter, I realise she’s also teaching us.
Being with Angelina reveals a whole new side to life, a beautiful world not everyone realises exists.
She shows us that despite life’s setbacks, we can always manage a smile.
Angelina is our precious little princess. She’s perfect in every way.
This genetic disorder causes the skull of an embryo to fuse early in development.
It leads to pronounced facial features and low-set ears.
Craniofacial surgery is necessary to create space for the brain to grow and with surgery patients can have normal life expectancy.
Originally published in that's life! issue 21 - May 28, 2015