Simple things like going to school and attending vital hospital appointments have become very difficult for four-year old Lowri Edwards. Lowri has Downs Syndrome and is unable to travel safely in her standard car seat as she slumps uncomfortably to one side and is able to wriggle out of the safety straps. This has meant that she and her entire family have become virtually housebound.
Lowri needs a specialist car seat to give her lots of extra support to prevent her slumping, a turntable base to make getting in and out of the car easier and straps to keep ‘the little Houdini’ securely in her seat. However, as this costs £1,252, mum Haylie Shuttleworth 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.
Now Newlife is helping to secure the specialist equipment that Lowri needs – and is looking for the support of ‘local heroes’ to make this happen. You can help by going to www.newlifecharity.co.uk/essex and clicking on the Donate button beside her story. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email [email protected] Any funds raised above what is needed for Lowri will help pay for equipment for another child in Essex, as she is one of 22 children with equipment needs in the county totalling £12,076.
Although Lowri from Clacton on Sea can say ‘hello’ relatively clearly, most of what she says is babble and her muscles are loose and floppy, which makes it difficult for her to walk anything other than short distances and also causes her to slump uncomfortably to one side when she sits. She also has hypermobility, which causes her joints to move well beyond the expected range – and allows her to wriggle out of the straps in her high street car seat.
Mum Haylie said: “We have been really struggling to find anything on the high street which would be suitable for Lowri, but she is now above the weight limit for her car seat, so we can’t really use it. We can only go on the shortest, most necessary journeys and we will soon reach the stage where we just can’t use it at all, which will mean she won’t be able to attend her special needs school which is several miles away.
“This specialist car seat would make a huge difference to us. It would be so much more comfortable for Lowri to sit in – and in theory it should last her until the age of 12, so it would be the only one she needs.
“It would be fabulous, especially as she wouldn’t be able to slip out of the straps and the swivel base would really help her transfer safely into her wheelchair, which we self-funded, as I have to lift her up and across and I often have to wear wrist braces for Carpel Tunnel Syndrome.”
As well as Lowri, Haylie has three other children living at home; Joshua, aged 17, Billy, 14, – who has a missing chromosome, resulting in learning difficulties – and seven-year-old Kelsey. All are now frustrated at not being able to go out together as a family in the car.
Haylie added: “Not being able to go out in the car is having an impact on all of the children. Most of my family live in Chelmsford, including my older children, so they are all missing out on quality time with each other. At the moment we can only really go somewhere if it’s within walking distance.”
Newlife is currently receiving more Equipment Grant applications than at any time in its 25-year history, which is why public support is needed to help families caring for disabled and terminally ill children in Essex.
The website www.newlifecharity.co.uk/essex includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – and shows specific ways people can help support children with disability and terminal illness and their families in the county.
Pictured: Lowri Edwards