A terminally ill toddler is being forced to sleep on the floor every night after a Chester housing association halted vital building work on her family’s home.
Three-year-old Isabelle Gregory, who suffers from the life-limiting mitochondrial disease, has been waiting more than a year for Sanctuary Housing to fulfill their promise of building a new extension on her Newton home that will enable her to sleep in the specialist bed she needs.
Her parents Jemma and Craig were moved from a larger property in Hoole to their current home in Sussex Road, Kingsway in January 2014 after Sanctuary said they would build an extra bathroom and bedroom to accommodate Isabelle’s mobility needs.
Up until then she had been sleeping in an upstairs bedroom while her siblings Isaac, six, and Imogen, two, shared a bedroom but ideally, Isabelle needed to be in a room downstairs.
After a five month wait, the project appeared ready to go ahead before Sanctuary said they had discovered sewers running through the back garden which required a build-over agreement, and the Gregorys were told it could be a while longer before the work could continue.
By this time, a risk assessment revealed Isabelle was no longer able to be carried upstairs because of her seizures and since her specialist bed cannot be moved downstairs, she was forced to sleep on the living room floor - something Jemma and Craig assumed would only be for a short while.
But despite starting work earlier this month and digging 4ft trenches in the garden, the builders have been made to stop the work yet again after being told the plans were wrong and adequate paperwork had not been completed.
Exasperated Jemma, who founded Chester’s SPACE charity for children with additional conditions, told The Chronicle she now feels ‘enough is enough’ and says she’s becoming increasingly worried for Isabelle’s health.
“She needs the special bed to stop her spine from curving,” said Jemma. “She also has no muscle tone so she’s very heavy when we try to lift her; I’ve fallen on the stairs with her. She needs to be downstairs and we’ve been promised this extension since January 2014.
“Isaac and Imogen are also sharing a room, which was OK at the start but now Imogen’s getting older she should have her own room.
“I explained all this to Sanctuary and we were given a date of August 3 to start work. They came a week later and started digging these trenches in the garden, exposing drains, and we had to put all the garden equipment in the house.
“We could live with all this if we knew we were getting an end result but we’ve been promised over and over again that the work is ongoing but nothing’s happening and we’re just getting conflicting information from all ends because nobody wants to take responsibility.
“We now have no garden, the house is like a building site and most importantly, Isabelle is being affected.
“She already has a life limiting condition so why should she have to be so uncomfortable in the short time she has with us?”
A spokesperson for Sanctuary said: “We are very sorry for the delay to work at the family’s home and have arranged a visit to see if we can provide additional support while their new extension is being built.
“It took longer than we had hoped to agree a plan of works with the tenants and gain approval from the relevant authorities and we are working with all parties involved to come to a resolution so that the work can be finished as quickly as possible.”
