Little Cameron Cuddihy from Yardley will sleep safe and sound now, despite the 40 seizures a day he can have, thanks to the emergency loan of a specialist bed from Newlife Foundation.
A rare form of Epilepsy called Dravet Syndrome means five-year-old Cameron has a variety of seizures each day. He is regularly hospitalised and has been admitted to intensive care three times, where he was put into an induced coma. He also has Autism, isn’t able to talk or walk, but can move around on his knees.
Cameron was sleeping in a standard bed with a guard rail, but this left him at risk of falling out, or even injuring himself on the sides as he would pull himself up and topple over. If he had a seizure during the night he would also hurt himself on the sides of the bed as well as fall out, and although pillows were used to cushion him, his parents worried these would put him at risk of suffocation.
As a result his parents, Vanessa and Anthony, would spend their nights monitoring Cameron by video camera in the room he shares with his brother, Callum, aged nine – rushing into him every time he moved in case he hurt himself. The night time disturbances also had an impact on Callum and their 11-year-old sister, Amelia, who then found it difficult to concentrate at school.
In desperation the Cuddihy family contacted Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Recognising the urgency of the situation the charity was able to ensure Cameron received a special bed through their emergency loan service, which provides equipment to children who are in very urgent need – if they are in danger, unsafe, at risk of injury, suffering needless pain or just can’t wait due to their prognosis.
Now Cameron sleeps in a high sided bed which has a soft interior, double doors with windows which provides easy access for his parents in an emergency. The bed can also be raised and lowered which helps Vanessa and Anthony care for him without further damaging their backs.
Vanessa said: “This bed keeps Cameron safe and means everyone else can get more rest. We can check the video monitor and know he’s ok and if he moving around we don’t have to go in to reposition him all the time so he can’t hurt his head, legs or arms.
“Cameron’s seizure activity goes through different stages, and they have recently reduced to him experiencing just three or four major seizures a day – which is when he will convulse, as well as another four or five seizures known as absences, which is where he will become blank, staring into space. Not having so many of them has really helped his development, which has come on in leaps and bounds. However, the stages his epilepsy go through never last too long.
“We all think the new bed is marvellous, he’s enclosed around the sides, but he can see us through the window. Whatever stage his seizure activity is in, we know he’s safe in bed now.”
The emergency loan service offered by Newlife includes specialist wheelchairs, buggies, beds, seating and portable hoists can be delivered to the family home, often within 72 hours. Each equipment loan is made for around six months, while Newlife works with local statutory service to try to secure long term provision. If this is not possible, Newlife can further support families through equipment grants for permanent provision.
In response to growing need for essential equipment in The West Midlands, Newlife Foundation launched its West Midlands Fund. The fund’s website – www.newlifecharity.co.uk/westmidlands – enables local people to find out who needs help in their country right now and highlights the support the charity gives families. If you would like to find out more please contact the Newlife County Liaison Team on 01543 431444 or email local@newlifecharity.co.uk.
The Newlife Foundation West Midlands Fund has already helped 1,153 children, providing them with equipment worth £1,248,645. But there are still 97 children in the county who are in urgent need, waiting for equipment totalling £28,850.
For more information about Newlife and ways in which you can help raise funds, visit www.newlifecharity.co.uk. Newlife Foundation guarantees that 100 percent of the money donated to The West Midlands Fund will help provide specialist equipment for children in the county.
Pictured: Cameron Cuddihy
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