Three-year-old Freddie Khoneizer has a condition that affects his mobility and rapid growth is a side effect. It is essential that Freddie, from Stone, has a specialist car seat with lots of additional padding so he can travel to his many medical appointments in safety – and now Newlife is making that happen, thanks to the support of fabulous fundraisers at Denstone College in Staffordshire.
Freddie’s mum Lucy Khoneizer said: “Freddie is growing very quickly so he needs a bigger car seat to keep him safe, but these aren’t available on the mainstream market. I have given up work to care for Freddie so our income is significantly reduced – which made the thought of having to pay more than £800 for a specialist car seat very daunting. It is a huge relief to know Newlife can help, and I’d like to say ‘thank you’ to everyone at Denstone College for fundraising to help children in the county like Freddie.”
The Friends of Denstone College raised £10,000 for Newlife through a Bombay Dreams Ball held earlier this year. Former TV Top Gear producer and presenter of The Gadget Show Jon Bentley hosted an auction and raffle on the night, with music from Blurred Lines and food from the Five Rivers Group.
Event organisers Julia Belton and Angie Anderson said: “We are thrilled to have helped Freddie and five other Staffordshire children with the proceeds from our Bombay Dreams charity ball this year. We are very proud that Denstone parents gave so generously to what is an extremely worthwhile cause, and, from an organisers’ point of view, knowing that local disabled children have really benefitted makes all the hard work worthwhile.”
Freddie has a rare form of Marfan’s Syndrome, known as Neo Natal Marfan’s Syndrome, a disorder of the body’s connective tissues which maintain the structure of the body and support internal organs. Rapid growth is one of the characteristics of the condition, along with a weak heart. Freddie’s spine is also curving out of shape, which makes postural support even more vital.
Lucy says: “Freddie has a rigid back brace, but it is very uncomfortable for him to wear this while he is in the car – he gets agitated and upset and I end up stopping during journeys to remove it to give him some respite. That makes having the right postural support in a car seat even more important as it will help prevent the condition from getting any worse. The added bonus of the car seat from Newlife is that it has a swivel base, which will make it easier to get Freddie in and out of the vehicle without knocking his head and legs.”