Six-year-old Niamh from Bebington is a determined and sociable ray of sunshine who is in need of a specialist car seat so she can go out and about with her family in comfort and safety. Newlife Foundation for Disabled Children is appealing to local heroes within Merseyside to help Niamh get the specialist equipment that will give her the essential postural support she needs.
Niamh Crighton has Downs Syndrome which has resulted in her having low muscle tone and hypermobility of her joints; like many other children with Downs Syndrome she has too much movement in her joints. Niamh was unable to walk until she was three years old and as part of her condition, she has physical and developmental delays, floppy muscles and gets tired easily when walking.
Nothing stops Niamh from leading an active life – she loves attending school and is making slow but steady progress. She is in need of a specialist car seat as a recent growth spurt means that her booster seat is no longer big enough, she is now able to free herself from the seat while her parents drive. The distraction of Niamh moving about the car could potentially cause an accident making it unsafe for her and the family to travel in the car together.
Mum Mandy Crighton said: “We had a regular seat for Niamh for about four years. Once she outgrew it we transferred her to a booster seat with back support – we thought it would be fine but we quickly realised that the straps are too tight. Niamh needs to be positioned so her body is getting the support it needs while allowing her to sit comfortably like any other child. She is able to get herself out of the booster style car seat now, which is very unsafe, so the specialist equipment is really needed.”
The car seat Niamh needs costs £790 but this is beyond the family’s budget which is why they have turned to Newlife, the UK’s largest charitable provider of essential equipment to meet the specialist needs of children with disabilities and terminal illness.
Niamh’s parents explained: “It is a problem being faced by other children with Downs Syndrome and other disabilities. There is a gap in the market and shops, stores and websites do not cater for this essential item – a car seat with a three point harness for children over five years. We are just one set of parents who have searched around to find a seat which is not a booster/seatbelt style seat! Only companies with disabled equipment sell these specialist seats.” With the new car seat Niamh will be transported safely and securely in the family vehicle, it will allow her to be seated correctly while maintaining her posture – she will also be unable to free herself which will result in an easier car journey for the whole family.
Mandy added: “The car seat Niamh needs is much heavier and has a full harness strap so she will be unable to release the straps and get out, our minds would be put at ease because we know that she will be kept safe while travelling.” Right now, Niamh’s family is just one of 31 in the county who need equipment totalling £59,214. That’s why Newlife has a dedicated Merseyside fund -www.newlifecharity.co.uk/Merseyside which gives local people the opportunity to help local disabled children. Every penny donated or fundraised in the area is guaranteed to support families across Merseyside. To specifically support Niamh, go the website and click on the Donate button beside her story.
The Merseyside Fund supports equipment provision for under-19s facing any significant disability, whether acquired through birth defect, prematurity, accident or illness. Newlife has already provided 570 families in Merseyside with disability equipment – including beds, wheelchairs, seating and sensory aids – amounting to £479,300.
The website includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email firstname.lastname@example.org – and shows specific ways people can help support children with disability and terminal illness and their families in the county. Pictured: Niamh Crighton