Sebastian had just started his first year of primary school. Having been a socially reserved child in kinder, we saw Seb grow in confidence with his peers and with the older children at school. He excelled academically, enjoyed PE and playing with friends.

Sebastian at Day Oncology with Mr Jingles, Dec 2013

In 2013, after a period of ill health and weeks of tests and investigations, Seb was diagnosed with cancer in his brain and spine. (Disseminated Leptiomeningel Medullablastoma)

It is difficult to quantify how tremendously a cancer diagnosis can impact so many lives. For Sebastian, it was the battle for his life, which he fought with an immense amount of courage and resilience. He missed almost a year of school, endured both radio and chemo therapies, several brain surgeries, tests, scans and procedures too numerous to recount.

Sebastian lost his appetite for food and has relied on a PEG formula feed for almost a year. Due to long periods of hospitalisation and ill health he lost muscle mass from lack of movement and fatigued quickly. We/he came to rely on the use of a wheelchair for about 10 months.

Brainwave were fantastic to provide support to our family at this time by funding the hire of a wheelchair for Seb. His physiotherapist and occupational therapist at RCH, together with Brainwave, organised the chair and associated costs. They took the stress of this additional expense off our shoulders, which really helped considering the limit of family income while caring for a sick child.

Brainwave also provided a fun day during the school holidays, which Sebastian was able to attend with his sister. This was a wonderfully organised, entertaining and engaging experience for both the kids. It was a great opportunity to meet other children and families who have had similar experiences. Seb and Leila are looking forward to attending the next fun day!