A disabled three-year-old boy from Nottingham urgently needs a specialist seat to be able to eat with his family at mealtimes because he is at risk of hurting himself and unable to safely eat solid foods without one.
But Phoenix Stone’s family has been told it could take 18 months for statutory services to provide him with the specialist chair he needs so have turned to Newlife the Charity for Disabled Children in desperation amid fears he is being left in potential danger while they wait.
Phoenix has already been through more than most adults will experience in a lifetime. He has Hypotonia which affects his muscles and means he struggles to eat, as well as developmental delay, sensory overload and suspected autism. He also has behavioural issues and can suddenly become overwhelmed when around people.
Currently, mealtimes are a real struggle for Phoenix and his family as his posture isn’t correct and he often ends up kneeling and slumping while sitting on a regular dining room chair, which puts him at risk of choking.
Due to having food aversion and a very restricted diet, he uses a feeding tube the majority of the time but this is also proving dangerous without a specialist seat as he struggles to keep still. The family sometimes use his buggy at mealtimes but it isn’t a practical solution inside the house. It is hoped a specialist seat would also mean he could be encouraged to try more solid foods.
His mum Kimberley Sharpe said the lack of a specialist seat is making it virtually impossible for Phoenix to safely eat with his two sisters and reduce any further damage to his body and he is missing out on experiencing a positive dining environment.