Ryan

Ryan, a happy seven-year-old enjoying sport and art, had his life turned around in September. An MRI confirmed the existence of a tumour at the base of his skull, which was later confirmed to be a clival chordoma. This is a very rare brain tumour, especially in children, and difficult to remove surgically, and immediate neurosurgery was required to ensure Ryan’s life could be stabilised for future treatment.

Following numerous procedures, including a 16-hour operation to remove the mass of the tumour, it was advised that Ryan would benefit greatly from a procedure known as Proton Beam Surgery as clival chordomas are resistant to traditional forms of radiation treatment. This treatment is carried out at the Massachusetts General Hospital, Boston, USA.

Ryan’s strength and spirit have returned after the success and skill of the neurosurgery team at the Women’s and Children’s Hospital in Adelaide. The family is extremely grateful that his life has been prolonged and continue to hope for the best. We wish them all the best with the treatment planned in Boston.

Chordomas are rare tumours with an estimated incidence of 0.51 cases per million. Clival chordomas represent less than 0.2% of all intracranial tumours. Male-to-female ratio is 2:1. Chordomas primarily are found in adults and occur rarely in patients younger than 30 years.

If the tumour is not completely irradiated, it is likely to recur. Ryan still has to travel overseas to Boston to receive treatment.

Help us to progress our treatment here in Australia so this is not always the case.