A Pontefract couple whose three-year-old daughter has severe epilepsy and no awareness of danger say the emergency loan of a special bed from Newlife Foundation, the UK’s leading children’s disability charity has immediately transformed their lives – keeping her safe through the night and providing the whole family with peace of mind.
Darcy Holt is described by her parents, Jessica and Simon, as a ‘cheeky monkey with a big personality’, but a rare and complex genetic condition called Tuberous Sclerosis has resulted in epilepsy, which is currently uncontrolled by medication, developmental delay and a visual impairment as well as needing to wear hearing aids.
The toddler who also lives with sisters, Ruby and Chloe, aged nine and six, is unsteady on her feet when she walks, but will constantly climb – which became an issue in her previous high sided bed when she learnt how to climb over the top.
Jessica said: “She adores climbing – and she’s good at it – but we were worried she would have a seizure and fall when she was climbing over the sides of her bed. One time she climbed out of her cot and had a severe, prolonged epileptic seizure behind the door of her bedroom and I couldn’t get to her to give her the rescue medication she needed.
“We have a video camera in the room to monitor her for her safety, so we could see Darcy but couldn’t reach her. It was very scary.”
Now however, thanks to the emergency loan of a SafeSpace bed from Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness, Darcy can no longer climb out of her bed, and when she has a seizure she can’t hurt herself thanks to the soft sides which completely enclose the mattress.
The charity is providing the 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. The 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.
“We saw the benefits of the bed immediately,” said Jessica. “For the first time ever we have been able to take Darcy to bed and leave her. Before this, it would take hours before she goes to sleep, now it takes around ten minutes. I think it’s because she feels more secure in the bed – she also sleeps for longer too, although not all night. Now if she wakes and tries to climb out there’s no way for her to leave.”
“Now when she wants to go to bed she signs for sleep, takes your hand and leads you up to bed. Being able to go to sleep like this also gives Darcy a bit more independence. She is definitely safer at night and she is calmer and happier too. It has also given us all peace of mind that she is okay, so we can sleep better. It’s made a big difference!”
To find out more about Newlife’s work in West Yorkshire, go to: www.newlifecharity.co.uk/westyorkshire. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email [email protected]
For further information about how you can support families in West Yorkshire, contact Newlife’s Regional Fundraising and Awareness Manager for Yorkshire, Caroline Artschan, on 07534 491 933 or by emailing [email protected]
Pictured: Darcy Holt