It all started with one tiny lump on my wrist and then my whole world changed forever.
At 17, I sat across from the doctor with my mum.
‘Lynn, you have Neurofibromatosis (NF1),’ he said.
The genetic condition causes non-cancerous tumours to grow along the nerves, and it affects everyone differently.
Some people with NF1 have a few external fleshy growths, while others have them internally.
‘It’s nothing to worry about,’ Mum soothed.
She lived with NF1 herself and I’d never really noticed her tumours. She only had a few on her back and face, so I was comforted by her words.
But it became obvious quite quickly that I had a much more severe case than Mum did.
My tumours seemed to triple overnight.
Every morning when I woke up, I would face the mirror.
30, 31, 32... I counted staring at my stomach.
They were painful too.
‘Great job,’ my teacher said one day, gently patting me on the back.
Embarrassed, I cringed through the pain.
Eventually tumours took over every inch of my skin.
‘Gross acne,’ kids teased.
Growing in the most uncomfortable places, the tumours on my hands would often catch on my desk and tear open.
Pouring with blood, I’d have to quickly bandage my hand with a tissue.
With no real treatment available, I begged the doctor to do something.
‘Please just cut them all off,’ I cried.
But as it would put my body under too much stress, he could only remove six at a time.
I chose the tumours that caused me the most pain, like the ones on the soles of my feet and fingers.
So every couple of months I would make a routine appointment to have a handful of tumours removed under general anaesthetic.
When they grew back after every surgery, I felt like I was facing a losing battle.
For every one that was removed it felt like two more appeared.
Soon, my body was covered in millions of tiny tumours.
Through my 20s, my dating life was non-existent.
Then when I was 33, I met my partner at a local pub.
I was blown away that he didn’t care about my tumours
at all.
But when I found out I was pregnant, I had one question.
‘Does the baby have NF1?’ I blurted to the doctor.
He explained there was a 50/50 chance my child would get NF1, but we decided to not opt for genetic testing and wait until the birth.
In the meantime, the hormones made my NF1 flare up.
With every inch that my belly grew, my tumours became more red and angry until I could no longer see skin underneath.
Researching mothers with NF1 online, I came across hundreds of comments from sufferers urging women not to have children.
You can’t expose kids to this hate, one said.
It needs to end with us, another comment read.
Crying myself to sleep at night, I felt like a horrible mother and I hadn’t even given birth yet.
Finally, at full term, I was wheeled in for my C-section.
But all my worry vanished when my little girl Sarah was placed in my arms.
‘She’s showing no signs of NF,’ the nurse announced.
Thankfully, my condition calmed down slightly and watching Sarah grow helped me turn around my whole mindset.
‘We can’t be ashamed of who we are,’ I told my sweet girl if people stared at me on the street.
It’s like they thought I was contagious and they didn’t want to touch me.
But when I fell pregnant again, my anxiety came rushing back about not wanting to pass on NF1.
This time around, the tumours seemed even bigger and angrier.
Everything was worth it to hold my little man, Steven.
But then a doctor broke the news.
‘Steven has NF1,’ he said.
Instantly, my heart shattered.
His tumours were internal, so on the outside he looked like a normal little boy.
When Steven was four, more tests showed he had tumours growing on his optic nerve and in his brain, so he suffered from developmental delays.
Amazingly, he could walk and talk and now he attends preschool.
Our lives are full of doctors’ appointments but his grin has never disappeared.
‘I love you Mummy,’ the kids say, embracing me.
Wincing through the pain, every hug is worth it.
As technology advances, new and different types of treatments are available but unfortunately they’re extremely expensive.
So, together, the three of us raise money for the Children’s Tumour Foundation, which provides knowledge and support to people with NF1.
Hopefully, in the future women and men with the condition won’t be afraid to have children.
My two kids fill my house with laughter and my heart is filled with warmth.
I might be covered in millions of tumours, but all my kids see when they look at me is their loving mum.
To learn more visit the Children's Tumour Foundation www.CTF.org.au
