When Tayte was 3 1/2, he came down with an ear infection – but he became so unwell that within 4 days he was admitted to ICU at Princess Margaret Hospital. There he underwent an MRI and lumbar puncture which provided an official diagnosis – Longitudinally Extensive Transverse Myelitis (LETM). During his stay in ICU, his lungs collapsed and his parents were told he had developed severe pneumonia. After a 10 day stay he was released from ICU onto the general ward, where he stayed for another 7 weeks. He was discharged just before Christmas, but had to be readmitted on Christmas Eve, and the family spent 8 months at the Ronald McDonald House before finally being allowed to return home.
LETM is a very rare autoimmune disorder in which the spinal cord is inflamed, damaging the nerve fibres, and causing them to lose their myelin coating. This decreases the electrical conductivity of the central nervous system – which in Tayte’s case means he has been left partially paralysed, with bladder, bowel, kidney and respiratory issues. Since his diagnosis Tayte has had many more admissions to hospital, as well as 2 flights to PMH with the Royal Flying Doctor Service.
Tayte is now 7, and is currently taking part in an intensive neuro-physiotherapy program, which he travels 2 hours each way to attend on a fortnightly basis. He is expected to undergo further therapy for many years, and his doctors hope he will be strong enough to stand up one day.
Tayte has missed an extensive amount of school, and he hates that he cannot play sports or have playdates like his friends. Tayte loves to be around other kids, but also likes to spend time on his own. He gets frustrated very easily, but playing with Lego or PS 3 helps his concentration levels and allows him to relax. Frustration and anxiety are high priorities for his parents, because Tayte can often retreat into himself very quickly.
And yet he still lights up the room with his smile, his resilience and his cheeky attitude. His parents have big dreams for Tayte, and know he will definitely make his mark on the world.Share