Alex was diagnosed with a brain cancer(medulloblastoma/PNET) in the posterior fossa region of the brain at the age of 3½ years. The tumour was completely removed surgically, but he developed the post-operative Posterior Fossa Syndrome (also known as Cerebellar Mutism Syndrome) – now recognised to be a direct complication of deep surgery to this region. It can cause immediate post-operative difficulties with speech, language, swallowing, emotional regulation, cognitive processing, movement, balance and coordination. Alex did not receive specific neurorehabilitation and some symptoms improved over time. However, like many other children he continues to experience long-term neurocognitive and physical challenges that require ongoing support. These were previously considered unavoidable late effects of the six weeks brain radiation he also received after surgery alongside chemotherapy. He then had a further year of intensive chemotherapy.
After such an intensive long treatment programme at such a young age, his mother planned and advocated for Alex’s primary school entry with an Education, Health and Care Plan (EHCP) targeted to his specific needs. Serial, cognitive, endocrine and neurological assessments from the beginning, have shown that he has overcome some of his early challenges, some of which were ‘invisible’ and might otherwise have gone unidentified. He now receives growth hormone replacement therapy and needs regular endocrine, oncology and neuropsychology surveillance as he grows to maturity. He still experiences persistent imbalance and incoordination caused by the tumour and its surgery but neurodisability review for this acquired neurological injury is not part of his follow-up. Through the novel online Success Digital Therapy programme, Alex accessed weekly neurorehabilitation support for the first time in the 7 years since his diagnosis, resulting in improved balance and coordination…. and therefore confidence.
Success played a vital role in supporting the continuation of his EHCP and his parents’ choice of small independent secondary school over a mainstream setting, during a SEND Tribunal. This was crucial to providing an environment able to meet Alex’s complex needs, keep him on a par with his peers and enable him to fulfil his high innate potential during his key secondary school years. Adolescent hormones affect the executive functioning, decision-making and planning skills that develop at this time; these are important to achieving timely independence and educational goals.
Alex will be eligible for the weekly online Success friendship groups at 16 and the peer-to peer-mentoring programme from 14. In the meantime, he regularly attends Success picnics, zoo trips and conferences, where he and his family meet others with similar experiences. These connections have reduced his isolation and contributed to his confidence, wellbeing and sense of belonging as he matures.
