Night-times were a nightmare for the family of five-year-old Iyla Rose Marsh, from Stourbridge in the West Midlands – until they got the temporary loan of specialist equipment from Newlife the Charity for Disabled Children. Now, thanks to fabulous fundraisers at Central England Co-operative, Iyla is getting a permanent safe sleeping space all of her own.
Iyla – who lives with her parents, brother and sister near the town centre – has a complex condition that includes Cerebral Palsy, periventricular lukomialacia, SYNGAP 1 gene mutation, complex epilepsy and a sensory processing disorder. This means Iyla has limited mobility and brain damage.
Mum Sam said: “Iyla had gone through a six-month period in which she didn’t sleep more than three hours a night. The less she slept, the worse her seizures became, having up to 30 a day, which in itself made her extremely poorly. She has limited mobility but she was in danger of hurting herself – so she ended up sleeping on a mattress on the floor. Unfortunately, she could then pull herself up on furniture in her room, and she would try to move around the house.
“The less Iyla slept, the less my husband Chris and I slept and we were exhausted – you just can’t function properly on three hours sleep a night over long periods of time.”
Fortunately for the Marsh family, they already knew about Newlife because the charity had provided a specialist car seat for Iyla. Sam said: “Our amazing occupational therapist got in touch with Newlife once again, and within 48 hours a specialist bed arrived at our home through an emergency equipment loan. It instantly solved the problem and Iyla went from sleeping for no more than three hours to going through from 6pm to 7am, without us hearing a peep from her. It was like magic!”
Special-needs beds – which are designed to keep children safe and help them feel comforted and secure – are among the suite of equipment Newlife offers through Emergency Equipment Loans. It is the only nationwide service of its kind in the UK.
Sam said: “Every aspect of our lives is easier since Iyla got the bed on loan. As a direct result of sleeping more the number of seizures has been drastically reduced; she may only have one every couple of weeks. We don’t think she will ever be seizure free due to her conditions, but as long as she is sleeping properly, taking her medication and having her Ketogenic diet we can keep them to a minimum.
“Knowing that Iyla is now getting a special-needs bed of her own is such a relief. We want to say a huge ‘thank you’ to everyone at Central England Co-operative for helping make this happen. Their support of Newlife will make a huge difference to our family.”
Newlife has been Central England Co-operative’s staff-elected charity since 2012 – and colleagues and customers have raised £1.3million, which has in turn has helped fund specialist equipment like wheelchairs and walking frames, portable hoists and communication aids for more than 600 children in the retailer’s trading area.
Louise Dickens, Manager at Central England Co-operative’s convenience store in Glebe Lane, Norton, Stourbridge, said: “Central England Co-operative takes fundraising to help local communities very seriously, and we are committed to making a positive impact in the local areas in which we trade. Working with Newlife has provided a great opportunity for us to help make life easier for youngsters like Iyla.”
Newlife has supported 1,520 children in the West Midlands, with equipment totalling £1,474,399. Right now, the charity is working with another 67 families in the county with equipment needs totalling £47,948. To find out how you could help a child in the county, go to: www.newlifecharity.co.uk/westmidlands. Alternatively, call the Newlife County Liaison Team – tel no 01543 431 444 – or email [email protected]
Pictured: Iyla Rose Marsh