Feeling the sun on your face or the wind in your hair is a wonderful sensation, but for Lily-Mai Steele they could have serious consequences to her health. The four-year-old from Grays, Essex has a life limiting condition that means she is hypersensitive to weather conditions – even a shadow through the trees could cause her to have a severe seizure.
Lily-Mai also has scoliosis, muscle spasms and uses a wheelchair to get around – but without proper weather protection for her wheelchair Lily-Mai was housebound.
While her chair was provided by Wheelchair Services, they are unfortunately unable to provide accessories. But thanks to the help of Newlife Foundation for Disabled Children, the UK’s largest charitable provider of essential equipment to meet the specialist needs of children with disabilities and terminal illness, she can now go out no matter what the weather is doing.
Mum, Laura, said: “It’s such a simple thing, but I can’t begin to express the difference it has made to Lily-Mai and to us as a family. Before we had the weather protection, Lily-Mai wasn’t able to go out into the garden with her friends at school and if we needed to go out to the shops, one of us would have to stay at home with her – we couldn’t really do anything as a family. But all that has changed now we have the canopy and rain cover which keep her protected – whether that be from the weather or a passer-by’s cigarette smoke – we know she’s safe.”
Lily-Mai was helped by the Newlife Foundation Essex Fund, which supports equipment provision for under-19s in the county area who are facing any significant disability, whether acquired through birth defect prematurity, accident or illness. The website – www.newlifecharity.co.uk/essex enables local people to find out who needs help in the area right now and highlights the support given to local families.
Newlife has already helped 211 children in Essex, providing them with equipment worth £279,534. But more help is still needed as there are currently 19 children in the county who are waiting for equipment totalling £7,126.
Lily-Mai’s equipment cost £212 – it isn’t a huge amount, but it has changed her life and that of her family. If you would like to help Newlife Foundation change a child’s life, please get in touch. For more information about the Newlife Essex Fund, go to www.newlifecharity.co.uk/essex or email [email protected] or call the Newlife County Liaison Team on 01543 431444.
Pictured: Lily-Mai Steele