Little Zac Cox from Stowmarket in Suffolk can sit safely at home with his family, thanks to fabulous fundraisers and the support of two leading UK charities.
Zac, aged three, has a metabolic genetic disorder (Multiple Acyl-CoA Hydrogenase Deficiency) which has resulted in Cerebral Palsy, Epilepsy and Global Developmental Delay. He has no independent mobility and is unable to stand or sit unaided.
Mum Lauren Cox said: “Statutory services will only provide one piece of seating, and they gave us a wooden highchair for Zac. This is not particularly comfortable for him, so he was sitting on the sofa to relax. However, he would slump down and fling himself off – which just wasn’t safe. We had to watch him constantly.”
She added: “Most people get to have a comfy chair to sit in when they are at home – and Zac’s needs are no different.”
A specialist PPod seat – costing £1,039 – was recommended to Lauren, who turned to UK children’s disability charity Newlife Foundation for help. Funding through Genetic Disorders UK’s nationwide campaign Jeans For Genes Day has helped provide a PPod and Zac is now able to sit and play in safety.
Genetic Disorders UK has partnered with Newlife Foundation to offer more families affected by genetic disorders the vital support and equipment they need. Newlife received a grant from funds raised through this year’s Jeans for Genes Day, and this is helping to provide essential specialist equipment such as pain relieving beds, wheelchairs, car seats and portable hoists which will make a real and lasting difference to the lives of individual children and their families.
Lauren, who has two other young sons, said: “Zac looks really comfortable because he is properly positioned in the chair and can’t slump. This is particularly important when he is unwell, because he loses the tone in his body. A safety harness prevents him from being able to fling himself out – and the PPod has a tray for his toys so he can sit and play quite happily.”
The chair is portable, so he is able to use it in the garden – and Lauren can wheel him into the kitchen so she can keep an eye on him when she is cooking.
Newlife Foundation has provided £88,882 of specialist equipment for families of disabled and terminally ill children in Suffolk through 45 Equipment Grants. The figure stands at more than £11million across the UK.
Newlife Operations Manager Stephen Morgan said: “Demand for our range of practical support services is growing as statutory services’ budgets are reduced. Last year (2013/14), Newlife awarded 33 per cent more Equipment Grants than the previous 12-month period, with £2,088,105 funding vital specialist items for 1,303 children around the UK.
“Therefore, we are delighted to be working with organisations like Genetic Disorders UK. Together we can provide the equipment that will really change children’s lives.”
Genetic Disorders UK Head of Development Lizzie Bishop said: “We’re thrilled to have partnered with Newlife to help Zac and many other children like him. These vital pieces of equipment will help transform the lives of children and families living with genetic disorders in the UK.”
Pictured: Zac Cox
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