Bella was born on May 17, 2014. The significance of that date, World NF Awareness Day, didn’t register until the following year.
At birth Bella had three birth marks. Seemingly innocent, coffee coloured spots. By six weeks of age, Bella’s birth marks had multiplied, more than quadrupled…and despite being a first time mum, I knew something wasn’t right. It was after numerous specialist appointments in a desperate search for answers, that Bella saw a paediatrician who instantly diagnosed her with Neurofibromatosis Type 1. At the time, we had never heard of NF, and despite being warned not to google the condition, we typed NF1 in to the search bar and were horrified at the images we were confronted with.
How could birthmarks be indicative of something so sinister?
Bella is 5 now and her tumours have continued to grow. One tumour in particular is compressing her C3-C4 vertebrae, which places her at risk of paralysis. Bella’s tumour, like all NF spinal tumours, will not respond to conventional treatments, and so chemotherapy is not an option for us. Bella requires life threatening spinal surgery. For now, we watch and wait and hope she can reach 10 years of age, before they operate. We hope that her body can grow, to provide the Neurosurgeon with more space between her spine, her vital blood vessels and the tumour. We have regular MRI’s and we hope that during this waiting period, that she doesn’t become symptomatic (as any damage done by her tumour will be permanent).
Hope is often all we have. Hope that the tumour doesn’t grow. Hope that Bella won’t be bullied in school for being different. Hope that Bella continues to love her NF spots. Hope that there will be a medical breakthrough in treatments. Hope for corporate donors. Hope for a QLD clinic. Hope that the broader community begins to care about and recognise NF. Hope that a cure is found….
Bella knows that she is a NF hero.
She calls her birth marks her “NF spots” and when she has an MRI she tells her friends that the doctors need to take pictures of her “inside spots”. Bella is brave, hilarious and full of spunk. She has faced some developmental delays with speech and fine motor skills, but she is resilient and faces every challenge with positivity and a determination that leaves us in awe of her.
Bella for the most part is just like any other 5 year old.
She loves imaginative play and hosting birthday parties for her dolls. Today her favourite colour is blue and her favourite shoes are pink and sparkly. She loves doing Ballet with her dad and going on adventures with home-made maps. Bella loves to dance and her favourite song, is “Get back up again” from the Trolls movie- which suits her perfectly. Bella is perfect and we love our spotty little NF hero “the roast beef” and “three thousand”.