Little Alfie Lowday’s parents want him to be able to experience as much of life as possible, despite the fact he has a complex health condition.
The Exeter family are being helped by leading UK children’s disability charity Newlife Foundation, which is providing a specialist buggy so they can get Alfie – and all his emergency medical equipment – out and about in the community.
Alfie, who is 19 months old, was born prematurely, which resulted in breathing problems and him being given a tracheostomy. He was also born with a rare condition – craniosynostosis – which means his skull fused too early and potentially would have caused pressure to his brain. Alfie has just recently undergone major skull surgery at Great Ormond Street Hospital to correct this. Because of his complex needs, Alfie receives oxygen 24/7 and has to travel everywhere with his oxygen tank and monitor, suction machine, ventilator mask and emergency box.
Mum Rosie Giles says: “A standard child buggy just can’t accommodate all this equipment safely. Whereas a specialist buggy is not only strong enough to carry it all, it provides easy access to the equipment when we need to get to it quickly for emergency procedures.”
Local statutory services will not provide a specialist buggy for Alfie because he doesn’t have specific postural needs. Faced with a £780 bill for the equipment, Rosie and her partner Tom Lowday turned to Newlife Foundation for help.
“Rosie said: “Newlife had previously helped us by providing a specialist lie-flat car seat so Alfie could be discharged from hospital after he had his tracheostomy. Our community nurse suggested we contact the charity again.”
Recognising the family’s urgent need, Newlife has fast-tracked their application and they will soon be taking delivery of the buggy they need – when they really need it.
Rosie said: “We like Alfie to be able to experience as much of life as possible and this new buggy will enable us to do a lot more – and a lot more easily. We are so grateful for all the help we continue to receive to enable Alfie to do this.”
Increased demands on the charity’s resources means Newlife is appealing to ‘local heroes’ to come forward to donate or fundraise to help disabled and terminally ill children in their areas. Newlife is currently working with another five families in Devon, with equipment needs totalling £15,831.
The charity guarantees that 100 per cent of all monies donated or fundraised in Devon can be ring-fenced to specifically provide equipment for disabled and terminally ill children within the county. If you think you could 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.
Alfie’s buggy provision is being made through Newlife’s Equipment Grants service which last year (2013/14) provided 1,303 grants for children around the UK totalling £2,088,105.
Newlife also offers an emergency equipment loan service – called Just Can’t Wait – for families of life-limited and terminally ill children which aims to deliver vital support within 72 hours. A dozen Devon families have been helped through Just Can’t Wait.
The charity’s Play Therapy Pods provide specialist sensory toys on three month loans. Each ‘pod’ contains around £400 of equipment; there are over 200 in circulation, providing development opportunities for children of different ages and sensory needs. Thirty-five PTP loans have been made to families in Devon.
All support services are accessed via the Newlife Nurse Helpline – freephone 0800 902 0095 or email nurses@newlifecharity.co.uk.
Pictured: Alfie Lowday.
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