A dad who thought his baby son’s tendency to stick out his tongue was an adorable trait had to share the heartbreaking news that it is actually the symptom of a rare disease which means he may not reach his second birthday. Tyler James Hadley, now nine months old, was born with spinal muscular atrophy type one – the most severe version of a rare neuromuscular condition, that makes his muscles extremely weak, causing him difficulty sitting up, moving and even swallowing milk.
It wasn’t until he was rushed to hospital at five months old, after choking on some Calpol, that doctors realised something was seriously wrong. His dad Louis Hadley and mum Lisa Money, from Portsmouth, discovered that Tyler’s tongue flickering in and out of his mouth, together with failure to meet milestones like sitting up and rolling over indicated he had been born with the genetic condition.
Louis said: “When they explained that it was most babies with the condition don’t make two years of age, we were devastated. We just broke down and cried.” Friends are now raising money for Tyler to travel to France for treament with a new drug that has been shown to stop the deterioration of the disease, but is still only on trial in the UK.