A St Albans six-year-old with Cerebral Palsy and severe learning difficulties sleeps in a special bed at home, but is unable to go away overnight to enjoy respite care at her grandparents’ home, or spend quality time away with her parents and sister, as a standard bed wouldn’t keep her safe. However, a specialist travel bed would give the whole family much more freedom.
Lillie Portway has recently learnt to walk with splints on her legs and is very active around the home in the village of Bricket Wood. She doesn’t let being visually impaired or non-verbal stand in her way, but as she has no awareness of danger, she can’t be left unsupervised for a moment, including overnight. Which is why she has a special bed at home, giving parents Gemma and John peace of mind that she is safe. Without a special travel version, the family are restricted to their own home and desperately need this equipment to help Lillie experience staying at her grandparents’ London home with her big sister, Sophie, aged eight, as well as respite care and family trips together.
Now Newlife Foundation for Disabled Children is looking for ‘local heroes’ who can help us make this happen. We already have £644 towards this vital piece of equipment, which costs £1,930.
Lillie’s grandmother, Sue Meuleman, said: “Lillie is lively, into everything and has a really happy personality. She loves giggling and her laugh is a joy to hear, but Lillie can’t be left alone for a moment, she is a danger to herself. At home there are gates everywhere, but once she’s in her special bed, she’s safe.
“Without a special travel bed though, Lillie can’t go away overnight as it just wouldn’t be safe for her in a standard bed. Her parents need help so Lillie can stay either at my house or her other grandmother’s at her Markyate home, or with a carer.
“It means also means they could do things like come and stay at my house for Christmas, so we could enjoy proper time together, without Lillie’s dad, John, having to take her home early and they would be able to stay with John’s dad in Bognor Regis too.”
“It would make a great difference. Everyone would have peace of mind that Lillie was safe, wherever she was.”
We need donors and fundraisers who want to really make a difference, helping us transform Lillie’s everyday life. To find out how you can support Lillie, go to www.newlifecharity.co.uk/hertfordshire. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email local@newlifecharity.co.uk.
Newlife guarantees that 100 per cent of monies donated or fundraised in Hertfordshire will be used to specifically help children with disabilities and terminal illness in the county. Any money raised surplus to requirements for Lillie will be used to help other local children.
Pictured: Lillie Portway with her sister Sophie
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