A life-limited four-year-old from the Isle of Sheppey with complex medical and physical needs can finally sit in comfort, thanks to a simple piece of specialist equipment from the UK’s leading children’s disability charity, Newlife Foundation.
Ezmae Catley only has the abilities of a new born baby, needs 24-hour oxygen and is fed through a tube. She can’t tolerate being upright, even with support, but lying on the sofa put her breathing at risk as her head needs to be at an angle to keep her airways clear, and being in bed takes her away from the rest of her family.
Parents Claire and David had been struggling to find a suitable chair for Ezmae to be comfortable in for a while when they saw a photograph of a specialist chair called a P-Pod – essentially a bean bag with a moulded chair attached. Ezmae was able to try it out and was able to sit in it comfortably and happily. As it could be tilted, it also meant her breathing wasn’t restricted and she was able to be wherever the rest of the family were.
Ezmae’s occupational therapist then recommended the family get in touch with Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness. The charity was then able to fund a £488 specialist seat which has made life much easier for the whole family.
Claire and David believed Ezmae was perfectly healthy when she was born, just like their other four children – Chloe, Zach, Taylor and Chiara – whose ages range from 12 to 17. However, when they brought her home to the island which is just off the northern coast of Kent, they quickly realised things weren’t right.
Mum Claire said: “She wasn’t feeding properly, was crying constantly and began having up to 30 seizures a day – but doctors kept saying she was fine.
“It was a nightmare. It felt like we were banging our head against a brick wall. Eventually, after six months of seeing doctors, Ezmae was sent for an EEG and saw a neurologist from a London hospital. He admitted her straight to hospital in London and within three days we had a diagnosis.”
Claire and David were told Ezmae has Hypoxic-Ischemic Encephalopathy, which means her brain had been damaged by lack of oxygen. As her condition progressed, it has resulted in Cerebral Palsy, respiratory failure which needs constant oxygen, Epilepsy and Dystonia – a condition which causes painful muscle spasms. She is fed through a tube and recently lost her sight.
Now the specialist chair keeps Ezmae snug and safe with all the support she could need, and in just the right position to help her breathing. It also gives her a safe place to recover when she experiences seizures and her family know she is safe.
Claire said: “Ezmae will sleep in the P-Pod too which is nice, because before she was in my arms or on the sofa. Her brothers and sisters are able to easily play with her in the chair too and as it is mobile we can take her with us in it everywhere. She doesn’t move, but we have peace of mind that she’s comfy and safe and it will suit her for years to come – and it’s pink – our favourite colour!
“It’s great to know there is a charity like Newlife which can fund disability equipment as it can be extortionately expensive. When it comes to the comfort of your poorly child you will pay anything, but Newlife takes away some of the stress of having to fund everything yourself.”
Right now, there are another 17 children with disabilities and terminal illness in Kent with equipment needs totalling £27,064. If you think you could help, go to the website www.newlifecharity.co.uk/kent and click on the Donate button. Alternatively contact the Newlife County Liaison Team on 01543 431 444. Newlife guarantees that 100 per cent of the money donated to the Kent fund will help provide specialist equipment for children in the county.
To find out more about Newlife’s work in Kent, go to: www.newlifecharity.co.uk/local and click on the map. For full details of Newlife Foundation’s range of practical support for disabled and terminally ill children and their families, call the Newlife Nurse Helpline – 0800 902 0095 (free from UK landlines and mobiles) – or go to: https://newlifecharity.co.uk.
Pictured: Ezmae Catley