LITTLE Maisie is a joy to her mum and dad, Phoebe and James Elliott.
But, born prematurely, she is non verbal and non mobile, suffers from promordial dwarfism and is stricken with an incredibly rare genetic and life limiting disease.
To enhance her limited time her parents have launched a Go Fund Me page to buy toys to engage her and to help create happy memories with her and their three year old son.
“People come up to us and see the tube coming from her nose and they ask what’s wrong with her so we explain that she has a terminal illness and so often they say, ‘Oh she’ll be fine, she’ll get better’ when of course, she won’t,” said Phoebe.
“It can get very stressful.”
Phoebe and James are themselves Redditch born and bred and have lived in the town all their lives.
James is a delivery driver and Phoebe a full time carer for Maisie.
“We are just trying to raise a few funds, anything really, to make some memories of her time with us,” said Phoebe.
“She doesn’t really have any co-ordination with her hands but likes to discover things with her mouth.”
Maisie was born at Worcestershire Royal in December last year and doctors quickly realised something was amiss.
She underwent a bout of genetic testing which discovered she was suffering from Galloway-Mowat Syndrome 6, giving her developmental and physical abnormalities, sight issues and the early onset kidney disease.
Phoebe said they’ve been told there are just six sufferers of the condition in the world.
“We’ve made contact with a lady in America whose little girl has got the syndrome and it’s so nice to speak to someone who knows about it who can advise us,” said Phoebe.
The couple have set a target of £1,500 – to help them reach is visit: https://gofund.me/0991841b
