Take part in the Great Birmingham Run on Sunday 19 October and raise money to help children like local toddler Jayla Agbonlahor.
Shortly after her first birthday, little Jayla – from Erdington in Birmingham – suddenly stopped breathing. She was in hospital for the next five months.
Mum Louise Bostock says: “It was a terrible time. At first the doctors thought they were dealing with epilepsy but they have now put it down to a degenerative brain syndrome. Jayla has regular seizures; every 16 days she will start having a seizure about once an hour and this lasts for two or three days. When this happens she needs oxygen and suctioning to prevent her from choking.”
When she is having seizures, Jayla – who cannot walk or talk and is fed through her stomach by a tube – has to be propped up in her bed for her own safety. Having a standard cot meant having to raise one end with books and placing pillows all around her – but this wasn’t adequate and resulted in frequent stays in hospital.
Jayla, who will be three in July, needed a specialist cot bed – but these cost thousands of pounds.
Louise, aged 29, said: “Staff at the Acorns hospice and my community nurse told me about Newlife Foundation for Disabled Children. I was amazed and really pleased at how quickly the charity responded to my call for help.
“The bed for Jayla arrived very quickly. It tilts, so she can be properly positioned to help prevent choking, and rises up and down which helps me with my own health problems – I have severe arthritis and a degenerative spine condition. It has made a huge difference to our daily lives.”
The equipment was provided through Cannock-based Newlife Foundation’s Emergency Bed Loan (EBL) service. This was launched earlier this year (2014) as a direct response to calls from families whose children are sleeping in unsafe environments or need additional support to leave hospital.
EBL is just one of a range of support services offered to families of disabled and terminally ill children throughout the UK. For instance, last year (2013/14), Newlife funded over 1,300 Equipment Grants totalling £2,088,105 (117 of these children were in the West Midlands).
Newlife CEO Sheila Brown, OBE, said: “With statutory services across the UK implementing continued budget cuts, we expect to see more and more families turn to Newlife Foundation for help. That’s why we’re appealing for ‘local heroes’ to fundraise to help other disabled and terminally ill children in the West Midlands.”
If you have already signed up to the Great Birmingham Run and would like to raise money for Newlife – or Jayla’s story has inspired you to now give it a go, call the Newlife Community Fundraising Team on freephone 0800 988 4640 or email fundraise@newlifecharity.co.uk.
Newlife is a ‘Gold Bond’ partner for the Great Birmingham Run, which is the biggest event of its kind in the West Midlands. For £20 you can secure a guaranteed place – all we ask is that you raise £130 for Newlife.
Sheila added: “Every penny that people donate goes directly to funding vital equipment. This could be a wheelchair or buggy for mobility, a specialist bed or car seat to keep a child safe or a communication aid so they can tell their parents when they are hungry or in pain. And you can ring-fence your fundraising or donation to be spent in the county of your choosing.”
To find out more about the range of equipment grant and loan support services offered by the charity, call the Newlife Nurse Helpline on freephone 0800 902 0095 or email nurses@newlifecharity.co.uk.
Pictured: Jayla Agbonlahor.
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