LAST Sunday colour came to Brisbane’s CBD, and Ipswich lad Grayson Pearsall led the way in spreading it around.
Grayson, a tough little six-year-old, had an MRI while still a toddler that revealed that he was developing tumours along his nervous system and in his brain. The next year, another MRI confirmed a rare NF1-related tumour had started to develop along his spine. And now tumours are seemingly everywhere, at the back of his heart and behind both eyes.
The tumours didn’t stop him from taking part in a Colour Run on Sunday to raise vital funds towards support services and research for neurofibromatosis, the rare condition that has blighted his life. His family were at the Run to support him and other kids with NF.
Mum Jennifer said, “Grayson often struggles to keep up with his peers at school and during sporting activities, but like any little boy, he does enjoy getting messy and running to try and keep up with his big brother. As a family, we recognise how important events like this are to grow an understanding of such a complex and variable condition.”
Led by the Children’s Tumour Foundation (CTF), Conquer NF in Colour started in a shower of blue and green. The CTF is Australia’s only patient advocacy and support organisation for NF. Grayson took full part as Captain, as usual not allowing his condition to dampen his lust for life.
NF can lead to a range of significant health issues such as deafness, blindness, bone abnormalities, physical differences, learning difficulties, chronic pain and even cancer. Its impact can be both visible and invisible, but it is both unpredictable and progressive.
CTF CEO Leanne Dib, said, “After the incredible success of last year’s Conquer NF in Colour we were excited to expand our footprint to include Brisbane and Melbourne locations. We welcomed participants of all ages and abilities, ensuring an inclusive and enjoyable experience for all, as we ran in support of the child born every three days with NF in Australia.”
Grayson’s family are hoping the 13cm tumour along his spine doesn’t turn malignant and that his eye tumours don’t start to impair his vision. And above all, they’re hoping that this colourful occasion can bring some hope of a cure and that the organisation can get the support and recognition it needs to allow it to help the 13,000 Aussies living with the condition.