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 Hyptonia which affects his muscles and means he struggles to eat, as well as development 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.
Newlife is appealing to the local community for help to raise the £954 needed to provide him with the life-changing equipment.
Kimberley explained: “A new chair would make a massive difference. Mealtimes are so stressful; it’s constant chaos. No-one enjoys eating together in our household at the moment. Phoenix’s sisters want us to eat with them but he’s just not willing to participate. If he doesn’t learn the basics about sitting down and eating food now, we’re really worried he’s going to experience even more problems in the future.
“The chair would mean he’d have somewhere safe to sit and we could leave the table to go into the kitchen knowing he’s not going to be in danger. It won’t just mean the world to Phoenix but to our whole family. We’ll finally be able share mealtimes together and moving forward we can help him pursue his independence when eating.”
Kimberley said Phoenix’s occupational therapist had said they would have to wait more than 18 months for statutory services to provide a suitable chair and they were advised to contact Newlife.
The recent Coronavirus lockdown has made life even more difficult for Phoenix, as the youngster struggles to understand the change in usual routine following the outbreak.
Kimberley, who works part-time when she isn’t caring for Phoenix and his sisters, added: “His basic needs are not getting met as he isn’t able to safely access food and nutrition. It’s causing him to behave badly.
“I want my son to have the best life possible. If you met him you’d never forget him. He’s such a lovely, happy little boy with a beautiful smile. He can just switch so quickly which is so sad to see as he has such a sweet nature and is so loveable. He’s been through more as a child than an adult would do in their whole life and he’s only three years old.
“We feel guilty having to ask for support but the chair would make such a big difference to our family. I’m so grateful to anyone who can offer their support – it really would mean the world.”
Despite desperately wanting to step in and help Phoenix’s family, Newlife is facing huge financial pressures as a result of the ongoing Covid-19 pandemic and must first raise the £954 needed for the specialist seat so has appealed to the local community to help.
Carrick Brown, Senior Manager for Newlife’s Child and Family Support Team, said: “Being able to sit and eat a meal in safety is a basic right.. Phoenix needs a specialist seat urgently and having to wait up to 18 months leaves him potentially in danger and facing further developmental delays which could be avoided – he needs one now.
“We desperately want to help Phoenix and his family but need the local community’s help as we simply don’t have the funds to buy the equipment at the moment. We hope people recognise that, if it was their child, they’d want the best for them and do what they can to help Phoenix get the seat he needs.”
Newlife is the leading charity supplier of specialist equipment for disabled and terminally ill children around the UK. It has been providing grants of equipment including specialist beds, seats, buggies and car seats to keep children safe and improve their quality of life for 30 years. In addition, Newlife also runs the only emergency equipment response that aims to get loans of specialist disability equipment to families in crisis anywhere in the UK within 72 hours.
Newlife also loans specialist toys to families through its Play Therapy Pod service, operates a nurse-run helpline and actively campaigns for change to local and national policies relating to the provision of specialist disability equipment for children.
Anyone able to help Phoenix should contact Newlife on 01543 431 444, visit https://newlife.support/HelpPhoenix email firstname.lastname@example.org or you can also text NEWLIFE PHOENIX to 70500 to give £10 to his appeal. Newlife will receive 100% of your donation. Texts cost £10 plus one message at your standard network rate. Always get the bill payers permission.
By completing the Gift Aid form you will allow Newlife to claim an extra 25 per cent on donations you make at no extra cost to you.
Money raised above the amount needed for Phoenix’s chair will be used to help other disabled and terminally ill children in need.