Bella's Story
Bella was around 5 months old when we first discovered cafe au lait spots on her, but I brushed it off as nothing. Despite googling and learning about NF, I assumed I was an ‘anxious first time mum.’
At her routine vaccinations, her GP noticed them and mentioned that they could indicate a condition called neurofibromatosis. The GP referred us to a neurologist, initially in the public sector, but we were told this appointment was non-urgent and could take a number of years. Instead, we obtained a private referral, and saw a neurologist who arranged an MRI and genetic testing to confirm NF1.
Bella received a confirmed diagnosis of Neurofibromatosis Type 1 when she was 18 months old. She is the only one in the family to have the condition, and we quickly tried to learn as much as we could about it.
The early years saw Bella grow and develop into a sweet little girl, who loved blueberries, dancing and music. Bella’s language was delayed but was very creative in ways to communicate, she would reach out for our hand and say ‘show me’ to lead us to what she was asking for, as we often would tell her to ‘show us’.
At around 3 years old, we started occupational therapy (OT) and speech therapy sessions, but despite this support, Bella's social delays became more apparent over time, and especially as she started kindy.
We soon learned that navigating the school system and advocating for Bella was very difficult. Bella's first school was unsupportive of her needs and was unwilling to apply to the Education Department for additional supports.
From as early as term 2, we were told to pick Bella up at mid-day every day to provide her a sensory break. The school was unwilling for Bella to return to class after lunch each day, labelling it 'too disruptive'.
We offered multiple alternatives, such as providing OT & speech therapy at lunch each day for Bella, coming to the school and siting with her, or bringing her home for lunch and then returning to school. Every option was denied.
As the end of the year neared, the school advised that Bella would need to be at school full time next year, despite not being given the opportunity to attend a full day for over 6 months. The absences from school lead to delay's in Bella's education, and social and emotional development.
Soon after, Bella was diagnosed with ADHD & ASD, which are commonly associated with NF.
When Bella was just 6 years old, she tragically lost her dad in an unexpected accident, which was very difficult for her to navigate, and a lot of intense emotions to overcome.
Now, 8 Bella has become a girl who LOVES St Kilda (her dad’s favourite AFL team). She also loves drawing, art and ladybugs. Her favourite singer is Alex Warren. And she absolutely loves collecting feathers.
We've since relocated Bella to a more supportive school, and thankfully they've met us with open arms and a world of compassion, from teachers who were eager to learn about Bella's condition. They also bring in feathers they find to grow her collection.
In May 2025, Bella started having headaches. They were worsening and Bella was complaining of a feeling of pressure behind her eyes."
Due to the presentation of her symptoms, we took her to the emergency department of the local children's hospital on a number of occasions, each time being discharged stating the symptoms to be in relation to viral illnesses, fatigue etc.
It took three months for Bella to get an MRI (under sedation).
In August 2025, the MRI results came back, and a glioma in the hypothalamus (brain tumour) was found.
Unfortunately, this still didn’t provide any answers, as the different specialists overseeing Bella, did not believe the brain tumour was the cause of her head aches. Instead, other suggestions were provided, including a change of medication (which they had prescribed) and low muscle tone.
Almost a year has passed, and we still have no answers or explanation.
As we don't have access to any care coordination for NF, we've ben told to "present to the emergency department any time there is a concerning symptom change."
As recently as January, Bella was vomiting due to her headaches and was then admitted to hospital for 3 days.
But we still left with no answers for the cause of her symptoms. We receive care through the rasopathy clinic at Perth Children’s Hospital, but are only seen every 12-18 months, despite more frequent monitoring being needed. And there's no way to contact them.
We've had to see an NF specialist in another state (via telehealth), privately, to try and understand Bella’s likely prognosis and treatment plan, as her local team hasn’t provided one.
We've also been unable to see the local oncology team at all, and has missed out on attending the multidisciplinary meetings, where vital information is shared across departments.
The lack of care coordination, access to specialists, and communication with us is concerning, and amplifies the uncertainty and anxiety we're already facing."
Bella is often unwell, and fatigued, causing her to miss out on school and activities she once enjoyed. She often spends time in the sick bay, and now has vision changes as a result of the glioma.
Last year, she missed her own birthday celebrations as she was in the hospital.
Her time in the hospital has been overwhelming, and she has stopped sharing when she feels unwell, so she won’t miss out on things
We continue to advocate for Bella’s care, to find answers and to speak with specialists. But none of it is easy.
We often commuting 3 hrs to attend the many appointments with Bella’s care providers, including endocrinology, neuro-surgery, ophthalmology, and rasopathy, and still not getting any closer to understanding what's causing her pain.
One positive for our family, has been connecting with the Children's Tumour Foundation, in which we've found a lovely community. We recently attended their camp and were able to meet other families and enjoy a weekend away together, sharing our experiences with NF, and challenges navigating care. It's clear more is needed, especially for complex conditions like NF.
For now, we continue to advocate for Bella, and get her the support she needs across the healthcare and school system. Watching her grow up is a joy. Bella tells us she wants to be a babysitter of a police officer when she grows up, and intends on buying a house next door to me!
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