An amazing response from the local community has raised £17,672 to fund a powered wheelchair for Wokingham teen Liam Nazer, who has a rare genetic neuromuscular condition. Thanks to fabulous fundraisers the powered chair is soon to transform his life, giving him more freedom and independence – as well as keeping him safe and comfortable whenever he goes outside.
Liam, aged 14, has Spinal Muscular Atrophy Type 2 which causes muscle weakness and progressive loss of movement. He is becoming prone to respiratory infections as his condition worsens and he also has a severe curvature of the spine, for which he wears a body brace for an average of 15 hours a day. At an age where he wants to be as independent as possible, he has no independent mobility at all and has recently lost the ability to feed himself or hold a cup, so has now become fully dependent on his parents, Jeanette and Jeff.
The wheelchair he has been using since the age of nine has also become too small for Liam, who is waiting to have surgery to insert rods into his spine. The powered wheelchair will help keep his posture aligned as he recovers from his operation as well as provide extra support for his trunk and head – which will be increasingly important as his condition deteriorates. Having a fully supportive powered wheelchair means Liam will also have more independence and be able to have fun with his brothers, Callum, aged 12, and ten-year-old Mark.
Newlife the Charity for Disabled Children – the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness – launched an appeal in August last year to raise the £17,672 needed for Liam’s wheelchair – and the local community has responded by making donations and organising fundraising events.
As well as family and friends, complete strangers also made individual donations to help fund the powered wheelchair for Liam, ranging from £10 to several hundreds.
Fundraising events were also organised including a non-uniform day at Liam’s former school, St Teresa’s Catholic Primary School, in Easthampstead Road in October, which raised £300. A dinner dance at Sindlesham Court in November, organised by Cathy Breslin, Cathy Macdonald, Maria Mills and Sandrine Luff – all friends of Jeanette, Liam’s mum, raised £5,000.
Jeanette said: “We are beyond delighted that we were able to see so much help so quickly and now we are in the position that the chair has been ordered for Liam. We hoped it would happen quickly, but we weren’t sure it would because the sum of money involved were so large.
Liam is really no longer able to use his old wheelchair – and now we know the new one is coming I don’t feel so anxious!”
Jeanette added: “In a powered wheelchair Liam will be more comfortable while he is wearing his body brace and he can change his seating position for himself, without having to ask me or his dad, because of the chair’s tilt and positioning capabilities.
“As his parents, this wheelchair will mean everything to us. We try to give him as many experiences as possible and access to as much as we can. Knowing he would be safe and supported would also give us peace of mind.”
Newlife guarantees that 100 per cent of monies donated or fundraised in Berkshire will be used to specifically help children with disabilities and terminal illness in the county.
Newlife is currently receiving more applications for help than at any time in its 25-year history. Which is why public support is needed to support families caring for disabled and terminally ill children in Berkshire.
The charity operates its own successful recycling and retail business, working with leading manufacturers and high street retailers, to fund core equipment provision services – but statutory service budget cuts have left families increasingly reliant on charitable support.
With no-where else to turn, over the past five years there has been a 64 per cent increase in applications to Newlife – and we have responded with a 45 per cent jump in spending.
Newlife’s Consultant Nurse Karen Dobson said: “To meet current applications for vital specialist equipment, Newlife needs more than £8,000 a day – every day. With continued budget cuts in the statutory sector and an increasing number of children with disabilities, we are aware that without public support Newlife will not be able to assist all those families who look to us for essential help. While medical expertise continues to save children’s lives, we require help to support families’ daily equipment needs. Families like yours and mine.”
Pictured: Liam Nazer and brothers Callum and Mark