Bella is five, she is an only child and she loves to dance! When Bella grows up she wants to be either a vet or a doctor, she can’t decide. All she knows, is that she wants to help people.
Bella’s favourite movies of all time are Frozen, Moana and Trolls. Her favourite colour is “glitter” and “rainbow” and she is wise beyond her years. Bella is quirky and has the best sense of humour, she never fails to make someone laugh. Her favourite word at the moment is “literally” and her go to dance move is the sprinkler!
Bella also happens to have NF1.
Her Neurofibromatosis was caused from a spontaneous mutation- which is interesting because she also happens to be born on World NF Awareness Day!
we suspect that bella will do great things when it comes to to nf awareness - either that, or she will find a cure!
Bella was diagnosed with NF at six weeks old. For the past four years she’s had MRIs every six months to monitor tumours that are growing on and compressing her spine.
"When Bella was diagnosed with NF, I had never heard of it…and when we were told she had spinal tumours, I felt helpless and lost. I quit my job as a teacher to work for the CTF, the leading charity in Australia that supports families like mine, and I needed to feel like I was making a difference. Knowing that awareness is lacking is my motivator!"
Bella's mum Rachel says, "We don’t know what Bella’s future holds. NF spinal tumours do NOT respond to chemo, and because they are located in the cervical junction of her spine (her neck), operating to remove them is extremely risky. Bella’s most serious tumour is growing next to the main blood vessel that supplies blood to the brain. Surgery could result in paralysis or even brain death. The scary thing is, we were told they HAVE to be removed eventually regardless of the risks. There are no effective treatment options for kids with NF tumours. I don’t accept that tumours should be a child’s normal!"
Rachel refuses to allow bella to be defined by her disorder.
Whilst Bella has required speech therapy and OT to help her with her consonant blends and her fine motor skills, she overcomes any obstacle that is put in her way with a strength and positivity that is to be admired. Bella knows that she is an NF hero and has lots of spots that make her special, despite this, she is treated just like any other five-year-old and is such a happy, bubbly and fun child!