The family of a dying Sutton boy say they have been forced to spend thousands to adapt their home after “unacceptable delays” by council bosses over grants he is entitled to.
Danny Willett has incurable brain cancer and is therefore eligible for tens of thousands of pounds to help alter his Sylvan Crescent home for his needs.
His family’s lives were turned upside down in May when they were told he had just months to live, but his father, Mark Marshall, says they have been left frustrated having to wait for Ashfield District Council and Nottinghamshire County Council.
This included a 21-day delay while building quotes were obtained, and asking the family to sign contracts which they questioned.
With time running out, the family has chosen to pay for alterations themselves, including £5,000 on converting their downstairs dining room into a wet room for nine-year-old Danny.
Mr Marshall, aged 40, said: “We have not got the time, but everything has been a delay.
“Danny’s wish is to stay at home with his family and this is why we’re adapting the house.
“The councils say they want to assist, but they want to do it their way , like putting it out to tender for 21 days - but we needed it doing now.
“They have not listened to our needs and have been unreasonable.
“They want me to sign contracts, but I don’t think they should be putting us in this position.
“We feel let down by it all and it has caused a lot of stress.
“He needs to be comfortable and if that means paying for it then so be it, I’ve not thought about the money. But I have lost two weeks with Danny trying to sort this issue out, it’s precious time with him.”
Danny, a pupil at St Andrew’s Primary School in Skegby, was diagnosed at the age of four with a spinal ependymoma, a cancerous tumour on his spine.
He underwent an operation and radiotherapy, but a year later another grew and he had to undergo further treatment.
It was later found that he had several tumours on his spine, and a number in his brain, leading to doctors giving his family the devastating news in May they had been dreading.
Mark said: “We were told he had months, but you just cannot prepare yourself for this.
“We could not cope with it at the beginning, but what is keeping us strong is how strong Danny has been.
“He has done so well up until now and that’s how we’re managing.”
However, there has been no shortage of help from family, friends, the community and local businesses who have given up their time or provided discounts to help the family.
In the space of a week, work was completed on converting the dining room into a wet room.
Mark said: “It’s just amazing, it’s like the community has come together and it’s so humbling.
“I just want to say a big thank you to everybody, they have rallied around.
“You just can’t pay back this sort of kindness.”
Both councils said they were working with the family.
Derek Higton, service director for youth, families and cultural services at Nottinghamshire County Council, said: “These are very upsetting circumstances for Mr Marshall and his family and our occupational health team will continue to work closely with the district council to move this project forward and support the family during what is a very difficult time.”
Rob Mitchell, Ashfield council chief executive, said the council is now supporting plans to help build an additional bedroom onto the back of the property.
He said: “This is a tragic situation and we sympathise with the family.
“The council is dealing with this work as a priority and is progressing with the revised plans that were agreed for a brick-built extension on the rear to Mr Marshall’s existing property.
“Understandably, property extensions of this size take time, must be costed and go through the usual planning processes that are required for works of this kind.
“The wet room Mr Marshall has had installed is not subject to the same constraints as it is an internal construction.
“We are in regular contact with Mr Marshall and will continue to liaise with the family and the county council’s occupational health team.”