Trips to the local park, the seaside or an evening out at an annual fireworks display are commonplace for many families. But for 13-year-old William Davis, from Bury St Edmunds, his complex health needs mean family outings can pose lots of problems.
William has a combination of conditions including Tuberous Sclerosis, complex epilepsy, ADHD, challenging behaviours and a sleep disorder. He continues to have frequent seizures, despite medication. Whilst he can walk short distances – on a good day – he spends much of his time in a lightweight wheelchair.
Mum Paula Davis – who has Multiple Sclerosis – said: “Lightweight wheelchairs like William’s are great, but they are designed for towns. William’s life is already limited by his health but we are also finding it increasingly difficult to get him out to places like the park, the zoo, nearby Thetford Forest and the seaside, because of the different terrain.
This also limits the life of William’s six-year-old sister Jessica. “She recently said to me ‘We don’t go to the seaside mummy’ – and we don’t. What we need for William is a specialist buggy so we can get out to do the sorts of things most families take for granted,” said Paula.
“I could push a buggy over short distances, for instance in the local park, and on family days out I would take along my powered wheelchair and my husband could manage William. Having a varied-terrain buggy would benefit the whole family – but particularly William and Jessica.”
William currently attends a residential school in Hertfordshire, coming home at weekends and for holidays. The school is set in 65 acres of grounds and the buggy would enable him to join his friends for more outdoor activities.
Paula added: “It would also be useful when we take William and Jessica to see Ipswich Town play at home; we are all keen supporters and having a buggy would make it easier for us to wrap William up and make him comfortable.”
The buggy that best suits William’s needs costs £2,052, which prompted Paula to turn to leading UK children’s disability charity Newlife Foundation for help with funding.
Newlife has awarded 33 grants to children in Suffolk totalling £73,545. But the charity is experiencing hugely increased demands on its resources; calls to the Newlife Nurse Helpline – 0800 902 0095 – have shot up by 81 per cent. This is an average of 300 calls a week, with thousands more hits on the charity’s website https://newlifecharity.co.uk
“Because of the huge demand,” said Newlife CEO Sheila Brown, OBE, “we are calling on ‘local heroes’ to help us raise money to fund equipment in Suffolk . Newlife guarantees that 100 per cent of any gift or donation will go directly to support disabled children in the county.”
If you think you can help, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.
Any money raised in excess of William’s needs will be used to help other disabled and terminally ill children in Suffolk.
Sheila added: “Equipment ‘enables’. It can mean the difference between comfort and pain, engagement or isolation, freedom or a worsening condition. Therefore, our equipment grants are vital to so many children, offering practical support to families. Items can range from beds and buggies to specialist seating and communication aids. Equipment costing from hundreds to several thousands of pounds really can revolutionise a child’s life.”