The family of Rotherham girl Lily-May Earp are encouraging local people to support a newly launched fund to provide specialist equipment for children with disabilities and terminal illness in South Yorkshire.
Newlife Foundation for Disabled Children has already helped 269 children in South Yorkshire through equipment grants and loans totalling more than £250,338, so the charity knows there is a very real need for a specific county fund. In this way it aims to help more children, more quickly.
Right now, Lily-May’s one of 18 families in South Yorkshire currently working with Newlife Foundation to secure vital specialist equipment to help improve daily life. Further information about the Newlife South Yorkshire Fund – and how to specifically donate or fundraise to support Lily-May – can be found by going to www.newlifecharity.co.uk/southyorkshire or by emailing firstname.lastname@example.org. Telephone donations can be made by calling 01543 462 777.
Three-year-old Lily-May has a chromosome condition which means she needs a specialist cot bed to keep her safe at night – and give her parents some much needed sleep.
Lily-May Earp is currently sleeping in a baby cot in her Maltby home to keep her as safe as possible, but she has outgrown it as part of her condition means she is tall for her age. As she is learning to pull herself up, she could potentially tumble over the sides, but a single bed is out of the question as she has no awareness of danger and is at risk of rolling out and being unable to stop herself from falling as she has very weak muscles.
As well as a heart defect, Lily-May has learning difficulties, a curved spine, is unable to speak and is prone to chest infections and reflux. She has recently learnt how to bottom shuffle, which has really begun to open up the world for her and her parents are hopeful this has kick-started her development.
Mum Rebecca Earp said: “She is a beautiful, bubbly little girl with a cracking personality, but she does have a few issues health wise. Lily-May seemed to blossom once she began to bum shuffle and now she will go and sit next to the toy she wants and she can play with her baby brother Jackson who is two. They play ball games and fight over the iPad! They are very good together and he helps her a lot.”
The specialist cot-bed which would meet all Lily-May’s needs costs £6,536, prompting her parents to turn to Newlife Foundation – the UK’s largest charity funder of children’s specialist disability equipment.
“She needs to sleep in a bed the size of a single, but there are safety issues. She has reflux and is prone to chest infections but the specialist cot bed can easily be raised at the top which would help her reflux. The high low function would make it easier to take care of her personal needs – which would also help me as I have a bad back now from lifting her.
“We also hope the bed will help Lily-May be more independent as, when it is lowered as far as it can go, she should be able to crawl into it herself. Lily-May is really active when she is in bed and will often hurt herself on the sides and cry, so we wake to go to her. The new bed will have padded sides so she won’t be able to hurt herself, which means her dad Stephen and I will be able to sleep properly.”
She adds: “The new bed is absolutely perfect for her and it will make such a massive difference to Lily – and Stephen and I. It will give us the peace of mind of knowing she is safe.”
The Newlife South Yorkshire Fund supports equipment provision for under-19s facing any significant disability, whether acquired through birth defect, prematurity, accident or illness.
Vitally, the Newlife South Yorkshire Fund website – www.newlifecharity.co.uk/southyorkshire – will enable local people to find out who needs help in their county right now and highlight the support the charity gives vulnerable families. It includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email email@example.com – and shows specific ways people can help support children with disability and terminal illness and their families.
That might involve taking part in a local sporting challenge, give you information on how to organise a fundraising event – or even ask you to donate £5 today! Volunteers are also needed to help raise awareness of what we do and how we do it.
We hope that by launching the Newlife South Yorkshire Fund, children with disabilities or terminal illness in the county won’t have to go without the equipment they need for everyday life.
Newlife Foundation supports families in South Yorkshire through a range of free services:
Emergency equipment loans
Sensory and developmental toy ‘pod’ loans.
Pictured: Lily-May Earp