A two-year-old from Glasgow City with a rare genetic condition is now safe during the night, thanks to the loan of a special bed which her parents say has made a massive difference to all their lives.
Amelia O’Neill has Angelman Syndrome which affects the nervous system and has resulted in her having developmental delay and no awareness of danger. She is also fed through a tube and although she can crawl and pull to a standing position, she is unable to walk. She also has epilepsy and was having several seizures each day, until medication recently proved effective in reducing their frequency.
The youngster also experiences significant difficulty sleeping and would often only sleep for three or four hours a night. When awake, she would pull herself up and lean over the sides of the travel cot she had been sleeping in, putting her at risk of falling out and injuring herself. She was also at risk of trapping her arms and legs in the bars of the cot, despite cot bumpers.
Unable to leave Amelia alone if she was awake, her parents Tricia and Stephen would immediately go to her each time she woke, leaving them functioning on very little sleep. Then they heard about Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Mum Tricia said: “We heard about Newlife from the Angelman charity and Amelia’s paediatrician at pretty much the same time, so we got in touch with the charity and were told they could provide the loan of a special bed. It’s made a massive difference – if not for Newlife, I don’t know where we’d be. It’s a lifesaver.”
One of the services offered by Newlife Foundation is the loan of equipment when a child’s safety is at risk. The emergency loan service includes specialist wheelchairs, buggies, beds, seating and portable hoists which 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.
Tricia added: “Amelia is really happy with the bed, she is able to explore it if she is awake, but it doesn’t overstimulate her, so it helps her sleep and she is sleeping for longer.
“Now when Amelia wakes we don’t have to immediately rush into her, we know she is safe in the special bed. If she does have a seizure then we also know she can’t hurt herself in the bed because of the soft sides. It’s a real weight off our minds.
“We didn’t realise how badly lack of sleep was affecting us, until we were able to sleep properly. Now we feel normal again.”
In response to growing need for essential equipment in Glasgow City, Newlife Foundation launched its Glasgow City Fund. The fund’s website – www.newlifecharity.co.uk/glasgowcity – enables local people to find out who needs help in their country right now and highlights the support the charity gives families. If you would like to find out more please contact the Newlife County Liaison Team on 01543 431444 or email [email protected]
The Newlife Foundation Glasgow City Fund has already helped 52 children, providing them with equipment worth £91,703. But there are still five children in the county who are in urgent need, waiting for equipment totalling £2,690.
For more information about Newlife and ways in which you can help raise funds, visit www.newlifecharity.co.uk. Newlife Foundation guarantees that 100 percent of the money donated to Glasgow City will help provide specialist equipment for children in the county.
Pictured: Amelia O’Neill