Three-year-old Zac Summers, from Pontypool in Torfaen, is enjoying more family days out, thanks to fabulous fundraisers and the support of two leading UK charities.
Zac has the genetic disorder Angelman Syndrome which has resulted in epilepsy and learning difficulties. Mum Keri-Anne Price has a buggy to get him around – but she urgently needed a specialist car seat to keep him safe and comfortable on car journeys.
Keri-Anne said: “Zac had outgrown his normal car seat, but because of his poor body tone and epilepsy he will continue to need extra support.”
His occupational therapist recommended him having a specialist car seat – but this was priced at £1,715. So Keri-Anne turned to UK children’s disability charity Newlife Foundation for help. Funding through Genetic Disorders UK’s Jeans For Genes Day has helped provide the car seat and Zac is now safe and comfortable when he is out.
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.
Keri-Anne, who also has a six-year-old son, said: “Having the specialist car seat makes a huge difference. Zac isn’t able to get in and out of a car seat by himself, so this one has a swivel base that helps me transfer him without twisting him. It has a five-point harness and additional headrests and padding that stops him from slumping down in the seat, which is not only important for his posture but means that if he has a seizure he can’t hurt himself.”
She added: “Zac is definitely more comfortable in this car seat, so it helps us all get out and about more – which means his brother benefits too.”
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 really will 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 Summers
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