A MUM from York whose little girl has a rare cyst occupying a third of her brain is calling for an overhaul of changing facilities for disabled children.
As The Press reported back in 2023, Ada was born in June 2022 at York Hospital and for the first few months of her life everything seemed fine, but by the time she was four-months-old, mum, Ella Dean, says it became obvious something was wrong.
Little did Ella and her partner, Drew Millard, now both 31, know that their family were about to have their world turned upside down.
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Doctors discovered Ada had a dangerously large and very rare Arachnoid cyst which is filled with spinal fluid and was growing rapidly causing, brain damage, seizures, and blindness.
Today Ada is approaching her fourth birthday and although she can't walk or talk, Ella says she's a really happy little girl. Though the same size, the cyst has stabilised and although it isn’t growing anymore, the family have to attend six monthly hospital check-ups.
"She’s an absolute belter - she’s such a happy little girl!" said Ella, who lives in Acomb along with their older daughter, Lily, nine.
"We have now reached a point where she no longer fits on baby changing units that are supplied across York, and when we visit family attractions in the city there's no suitable changing facilities even in the disabled toilets for children who can’t physically use a toilet.
"We are changing her on the dirty floors all the time. This isn’t sustainable once she reaches a weight where I can no longer lift her this is going to be massively isolating for us as I know it will be for many other families already across York and the UK."
Ella has started a government petition calling for larger venues like supermarkets, leisure and shopping centres and family attractions like soft-play centres who already have large disabled toileting facilities to have their baby changing units upgraded to a changing bench to make life more accessible for children and adults with disabilities and medical needs.
"It breaks my heart knowing and seeing how isolated families are because of the lack of basic human needs in public spaces being met," said Ella.
"I’ve posted about it on TikTok and I’ve had more 100 families on my little TikTok network say they are affected negatively by this. It’s a massive gap."
The petition has so far had more than 3,400 signatures from people from across the whole of the UK and Northern Ireland. To sign go to: https://petition.parliament.uk/petitions/763785
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