Rebecca Lilly, 33, Algester, Qld
As I gently traced the patches on my baby’s arms, I felt uneasy.
Is it normal to have so many birthmarks? I wondered. Dexter had them sprinkled all over his body. My older boy Harrison, five, hadn’t had anything like that.
After a few weeks I took him to the GP. I was assured the spots were nothing sinister, but as Dexter got older I kept noticing little things that worried me.
His head seemed to be growing faster than an average baby and the right side of his face looked slightly misshapen. I kept going to different doctors and having my concerns dismissed. Was I just being a paranoid mum?
But at 11 months old, Dexter was referred to a paediatrician to rule out any bigger problems.
"Just a paranoid mum? "
‘I’d say Dexter has neurofibromatosis,’ he told me and my husband Luke, 40.
He explained it was a relatively common diagnosis. ‘Dexter probably only has a mild form but he may face some learning disabilities,’ he explained.
We learnt that the common symptoms of neurofibromatosis (NF)included flat coffee-coloured patches on the skin. ‘That explains his marks!’ I said.
We were told there was a more severe form of the disease that caused aggressive benign tumours to grow throughout the body, but it seemed very unlikely Dexter had it.
Relieved to finally have a name for what was causing Dexter’s symptoms, we were referred to an ophthalmologist. She wanted to check Dexter’s vision, as in rare cases, developing tumours can press on the optic nerve.
The first appointment went smoothly, but at the second one, she recommended Dexter have a follow-up MRI.
After the scan we waited anxiously for the result. Three weeks later, I didn’t know what to expect as I sat alone in the specialist’s office.
‘Dexter’s scan showed he has a massive plexus form tumour in his skull, pressing against his brain,’ the doctor said. I felt like the ground was crumbling beneath me as I struggled to understand what he was saying.
Dexter’s tumour was filling his cheek and right ear. Although it was benign, it would grow to press on nerves and arteries that would severely affect Dexter’s quality of life.
I was in tears as I rang Luke to tell him the news. Testing showed Dexter did have the less common, more severe type of NF.
Since Dexter’s diagnosis a few months ago, his tumour has continued to grow. His face is beginning to become disfigured as the tumour runs out of room. It’s so large that it is impossible to operate on.
There is no known cure for NF, which means Dexter’s future is uncertain. But we refuse to give up hope and will do everything we can to raise awareness and keep looking for a treatment.
Dexter is a beautiful, charming and fun-loving little boy who brings light and joy to everyone he meets.
Dexter’s aunt has set up a crowdfunding page to help raise money for his ongoing treatment. Visit www.gofundme.com/7hxtjz44