Bella is four, she is an only child and she also happens to have Neurofibromatosis Type 1.
Interestingly, Bella was also born on World NF Awareness day- I suspect she is going to do great things for NF awareness.
Bella was diagnosed with NF at six weeks old. For the past three 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 CTF. The Children’s Tumour Foundation is the ONLY charity in Australia that supports families like mine and I needed to feel like I was making a difference.
Knowing that awareness is so lacking is my motivator! We don’t know what Bella’s future holds. NF spinal neurofibromas 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- they are 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, that we were told they HAVE to be removed eventually regardless. There are no effective treatment options for kids with NF tumours. I don’t accept that tumours should be any person’s normal!
I have ensured that Bella is not defined by her disorder and whilst she knows that she is an NF hero and has lots of spots that make her special, she is just a normal and funny kid like other four year olds.
Bella loves to dance and loves imaginative play. Her favourite movies are Moana and Trolls and her favourite colour, she proclaims, is “glitter”. Bella is my reason for being, the keeper of my heart and so I will fight this relentless and evil disorder with everything I have, for as long as it takes. I just hope in between now and a cure, that Bella will continue dancing and sharing her love and cheeky personality with the world.