Four-year-old Haniya Malik, from Ward End in Birmingham, will soon be travelling in safety and comfort, thanks to fabulous fundraisers and the support of two leading UK charities.
Haniya has Spina Bifida, Hydrocephalus, Chiari Type II and Dysplasic Corpus Callosum. Paralysed from the waist down and with developing scoliosis, it is important that Haniya is appropriately positioned at all times.
Car journeys have become a major issue for the family, because Haniya has been using a standard car seat which she has outgrown. Mum Romana Naz said: “I try not to travel in the car because Haniya’s seat is very uncomfortable for her and she tells me her back hurts.”
Haniya was referred to a ‘car seat clinic’ in Birmingham, which recommended equipment costing £2,714. It has substantial head and side supports, a pommel so Haniya cannot slip down and a five-point harness to keep her secure. In addition, the recline feature will make it easier for her to sleep in the seat and its swivel base will ease transfers in and out of the vehicle.
Romana added: “Haniya was able to trial one of the recommended car seats; she was really comfortable and happy in it. Having a specialist car seat will make a huge difference as we will be able to visit family and friends in other parts of the UK. Not having the right equipment for Haniya has also impacted on her brother and sisters as well; if Haniya can’t travel then the whole family is affected.”
Funding through Genetic Disorders UK’s Jeans For Genes Day is now helping to provide the car seat and Haniya will soon be safe and comfortable on car journeys.
Genetic Disorders UK has partnered with Newlife Foundation to offer more families affected by genetic disorders the vital support and equipment they need. Newlife received a grant from funds raised through last year’s Jeans for Genes Day, and this is helping to provide essential specialist equipment such as pain relieving beds, buggies, car seats and portable hoists which will make a real and lasting difference to the lives of individual children and their families.
Newlife Operations Manager Stephen Morgan said: “Demand for our range of practical support services is growing as statutory services’ budgets are reduced. Last year (2015), Newlife supported 2,597 children around the UK through its range of equipment grant and loan services. Therefore, we are delighted to be working with organisations like Genetic Disorders UK. Together we can provide the equipment that really will change children’s lives.”