Kaysey and Andrew, from Biggleswade, are full-time carers to their profoundly disabled daughters, Liyla, 10, and five-year-old Delcie. Their rented Grand Union home, where they also live with son Freddie, 11, and two dogs, is no longer fit for purpose, despite providing them happy memories for the past nine years.
Liyla and Delcie are reliant on hoists, electric beds, a specialist extension and other adaptations to help them. But, with the girls getting older, their needs have outgrown their home. They require new hoists, a wet room, and, importantly, a property where they are not reliant on stairs.
We’re currently working in partnership with Central Bedfordshire Council to build the Balls a bespoke property – both affordable and fit for purpose. The development will enable the family to live safely, happily and with independence, with both girls’ bedrooms being downstairs, next to a Jack and Jill wet room, improved hoists and other much-needed adaptations.
Mum Kaysey said: “We love our home, but sadly, due to our circumstances, it’s just not able to fulfill our needs. Liyla and Delcie require one-to-one care; they struggle with daily tasks, from going down the stairs to getting in and out of bed.
“Our eldest, Freddie, was born in 2010, without complications. Just a year later, we welcomed Liyla into our family, who was born with an extremely rare condition which doesn’t even have a name; she is the only person in the world to live with it. It affects her development – she only started walking aged seven, and that was a big, happy surprise.
“Delcie came along a bit further down the line. I had a fine pregnancy, so there was no inkling that anything was untoward with her health. But, just two days before she was born, we received the lifechanging news that she had a chromosome disorder known as ‘inverted duplication and deletion of 8p’.
“We’re fortunate that Delcie isn’t paralysed, is happy and can understand what’s going on. But, due to her low muscle tone, she can’t hold her weight, so often relies on a wheelchair.
“There was nothing in our genes which led to our daughters being disabled; we were told it was merely bad luck and, for each pregnancy, there was less than 1% chance such disabilities would occur. No one could believe what happened.
“Due to their conditions, we require adaptations in our home to get by. We have ceiling hoists, downstairs bedrooms, electric beds which move up and down, alongside a specialist extension. But now the girls are getting older, and heavier to carry, the house is simply no longer suitable.”
Both Kaysey and husband Andrew are unable to work, instead providing full-time care for their children. While Kaysey would like nothing more than a job, she struggles to find an employer that understands her situation and enables her to take long periods of leave to stay with Delcie in hospital.
Instead, Kaysey volunteers for Home Start, a charity which supports new parents and their children facing tough times, and at Luton Crown and Magistrates Courts, supporting victims during trials. “It’s a way of giving something back”, she says.
Desperate for help regarding their home, the family contacted Central Bedfordshire Council who liaised with Grand Union.
“Both the council and Grand Union took us seriously and knew we couldn’t carry on like this. There were a number of solutions suggested to us, one of which involved knocking two houses down into one large, adapted home. But trying to find two empty properties next to one another in Biggleswade was a struggle!
“When Grand Union informed that we would have a brand-new chalet bungalow built for us, bespoke to our needs, it was beyond our wildest dreams.”
The Ball family’s new home is now well on its way to completion. The chalet will be spacious and fully adapted, with a Jack-and-Jill style wet room, next to Liyla and Delcie’s ground-floor bedrooms. It will also contain lifts and hoists, and will provide the much-needed space for all the family to flourish in.
Kaysey added: “It’s been fantastic to be involved in the project from the very start. We’ve had access to building plans and had a direct input in the design of the home.
“We’re fortunate the bungalow is a new build, as it will finally give us the space we require. We can’t wait to move in and, with an estimated completion around the autumn, we’re really itching to move.
“We’re so grateful for the help of Grand Union and Central Bedfordshire Council, who listened to us and helped provide us with a fully-adapted home we simply couldn’t have afforded on our own. We can’t wait for it to be finished.”