If 11-year-old Charlotte Griffin is blue-lighted into hospital this Christmas, her parents will at least have peace of mind that she has a specialist sleeping environment to keep her safe on the ward.
Charlotte, from Sutton Coldfield, has a complex condition including 16q genetic deletion, microcephaly, life limiting heart defects and right heart failure as well as life-threatening epileptic seizures; she has the understanding and behaviour of a two-year-old and no awareness of danger.
At home she sleeps in a specialist high-sided cot bed to help ensure her night-time safety – but she is frequently rushed into hospital with breathing and heart problems.
Mum Vanessa Griffin explains: “She is usually taken into Good Hope, Heartlands or Birmingham Children’s Hospital – but none of them has ever had a specialist bed available for emergency use for Charlotte; they have to be booked in advance. So Charlotte goes into a standard hospital bed. But because she has no awareness of danger, as she recovers Charlotte will try to walk off the bed while she is still attached to the gastrostomy feeding tube into her stomach, nasal cannulas to administer oxygen and an oxygen probe which monitors her breathing and triggers an alarm when she stops.”
The ward staff cannot guarantee minute by minute observation of Charlotte, so Vanessa always accompanies her daughter into hospital and stays with her.
To add to the situation, Vanessa’s husband works away from home a lot and she has two other children – aged three and ten. Her mother, who used to help out, has sadly passed away. She said: “Neighbours and school friends’ parents have been called in to look after the youngest two while I am in hospital with Charlotte. On one occasion the youngest had to come into hospital with me too.”
Vanessa added: “It has been a nightmare.”
With no funding available from statutory services, the family turned to Newlife the Charity for Disabled Children for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness and has previously given the family a special needs tandem buggy. With the support of fabulous fundraisers at Central England Co-operative – and a £300 donation from friends of the Griffin family – Newlife has now provided the £3,575 portable safety sleeper – just in time for Christmas.
Vanessa is keeping it next to Charlotte’s emergency bag ready to stow in the back of an ambulance for the next blue-light trip into hospital. She said: “I keep a suitcase in her bedroom at all times which is packed with pyjamas, nappies, her favourite toys and extra milk. Having the safety sleeper as well will make a huge difference to future trips to hospital. It will also mean Charlotte can more easily access respite care at our local hospice, which only has one bed that is suitable for her needs. It’s a wonderful Christmas present.”
Newlife has been Central England Co-operative’s staff-elected charity since 2012 – and colleagues and customers have raised £1.2million, which has in turn has helped fund specialist equipment like wheelchairs and walking frames, portable hoists and communication aids for more than 540 children in the retailer’s trading area.
Paul Barratt, Manager at Central England Co-operative’s convenience store in Walmley Close, Sutton Coldfield, said: “Central England Co-operative takes fundraising to help local communities very seriously, and we are committed to making a positive impact in the local areas in which we trade. Working with Newlife has provided a great opportunity for us to help make life easier for youngsters like Charlotte.”
Newlife provides equipment for children with disabilities and terminal illness through a range of services. Equipment Grants fund permanent provision; Emergency Equipment Loans support children with unstable, life-threatening or life-limiting illness and those who face injury due to the absence of appropriate equipment; Play Therapy Pods offer loans of sensory toys which aid development; Comfort Capsules help families of terminally ill children make memories.
The charity has supported 1,428 children in the West Midlands with £1,405,683 of equipment. To find out how you could help a child in the county, go to: www.newlifecharity.co.uk/westmidlands Alternatively, call the Newlife County Liaison Team – tel no 01543 431 444 – or email email@example.com
Pictured: Charlotte Griffin