The Maurer family will be sleeping peacefully this Christmas thanks to the emergency provision of a specialist bed to keep their five-year-old son safe.
Ethan, from Bearsden in Glasgow, has a genetic condition – Pitt-Hopkins Syndrome – which is characterised by learning disabilities and difficulty in walking. He loves to bounce but has no awareness of danger; this almost led to him suffocating when he bounced right out of bed and landed head first in a pile of cushions.
Mum Fiona Maurer said: “The cushions were on the floor to help break his fall in case he tumbled out of bed but on this occasion I found him upside down, unable to move and with an asphyxiation rash on his face!”
Desperate for help to find a safe sleeping environment for Ethan, Fiona was advised to contact Newlife Foundation for Disabled Children, which supports thousands of families across Scotland and the rest of the UK.
Newlife awards Equipment Grants for a wide range of aids for disabled and terminally ill children (e.g. 1,303 grants totalling £2,088,105 in 2013/14) and additionally offers emergency equipment loans. Recognising the urgency of the family’s situation, Newlife delivered a specialist bed to the Maurers within days as part of its Emergency Bed Loan service.
Fiona said: “It is absolutely fantastic – he can’t fall out. We have only had it a few days but Ethan loves it. He seems to like the fact that he is enclosed by its clear plastic sides. He can see what is going on but he is comforted by the sensation of being enclosed and safe. Even when he is overtired or over-stimulated he settles better in this bed.”
She added: “The fact that the bed is height adjustable is brilliant because it makes dealing with Ethan’s care needs much easier for us. He is only going to get bigger and heavier and this will help relieve the pressure on our backs. The bed also tilts, so we can raise his head if he is having breathing problems; Ethan suffers with reflux, so he is less likely to choke.
“This equipment brings us real peace of mind, knowing he is safe.”
Newlife’s Emergency Equipment Loan (EBL) service was launched in January this year (2014) in response to a growing need. Ethan’s is the 52nd loan – an average of one a week. EBL supports children sleeping in unsafe environments, those who have life-threatening conditions or are in need of additional support to leave hospital.
Beds are delivered direct to families’ homes on six-month loans, which gives Newlife time to work with local statutory services to explore avenues of public funding for long-term equipment or – if this is not successful – provide it through the Newlife Equipment Grant service.
For more information about Newlife Foundation, go to www.newlifecharity.co.uk. All support services can be accessed via the Newlife Nurse Helpline – 0800 902 0095 (free from UK landlines) or email [email protected]
If you would like to help support other disabled children in Scotland like Ethan, the Newlife Community Fundraising team would love to hear from you on 0800 988 4640 (free from UK landlines); alternatively, email [email protected] Newlife guarantees that 100 per cent of all monies donated or fundraised will be used to help fund specialist equipment for children in Scotland; it can even be restricted to individual counties.
Pictured: Ethan Maurer.
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