Jennifer & Grayson's Story
Grayson was born on 9 September 2016. His arrival wasn’t textbook—breathing complications saw him spend his first four nights in NICU—but once home, he seemed like any other newborn.
At around three months old, faint café-au-lait spots began to appear. At first, they were brushed off as harmless birthmarks. By six months, there were more, and NF was mentioned casually by a GP. It wasn’t until Grayson was hospitalised after an allergic reaction at 11 months old that a paediatrician raised real concern—not about the allergy, but about the number of birthmarks across his body.
That moment marked the beginning of Grayson’s NF journey. After referrals to multiple specialists and months of testing, a blood test in January 2018 confirmed a diagnosis of Neurofibromatosis Type 1 (NF1).
For Grayson’s parents, Jennifer and Tim—both serving full time in the Royal Australian Air Force—the diagnosis came alongside a major relocation. They had just been posted from Newcastle to Ipswich and suddenly had to rebuild an entire medical support team from scratch, often with clinicians unfamiliar with NF.
Grayson’s first MRI at just under two years old required a general anaesthetic—an experience Jennifer describes as traumatic and one she still struggles with. The scan confirmed benign tumours in his brain. Later MRIs revealed tumours along his spine, changes in brain tumours, and thickening of the optic nerve. Each scan brings uncertainty, because with NF, no two journeys are the same.
Alongside ongoing medical monitoring, Grayson now receives speech therapy, physiotherapy, and occupational therapy for balance, behavioural, and social challenges. He also sees ENT, audiology, ophthalmology, and paediatric specialists regularly. These supports are only possible through NDIS funding, with local providers stepping up despite limited awareness of NF.
Like many families living with NF, the emotional toll has been significant.
It was through counselling that Jennifer was encouraged to find others who truly understood the stress and uncertainty NF brings. That search led her to the Children’s Tumour Foundation (CTF) in 2019—just weeks before the Brisbane Cupid’s Undie Run. Attending that event marked the beginning of their connection to the NF community.
Since then, Jennifer and her family have stepped up in every way they can. Jennifer ran the Gold Coast Marathon in 2019, raising $2,500 for CTF. When bushfires, floods and COVID made fundraising harder, the family got creative—running bottle and can collections across their community, workplaces, and GP clinic. Tim even makes homemade chilli sauces and jams to raise additional funds.
More recently, Jennifer became a Step Up for NF Champion, raising over $8,000 in 2025, helping ensure families like hers don’t face NF alone.
“For me, stepping up is about education, awareness, and doing whatever I can to make things easier for Grayson and other children living with NF,” Jennifer says.
Grayson’s journey is ongoing, but he has a powerful team behind him—family, community, and an NF network that understands. And together, they keep stepping up.
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