A WORTHING family has been dealt a big blow as they try to raise the funds to pay for a refit of their house for their disabled son.
Debbie and Jim May had been trying to raise £30,000 to pay for the renovation of the ground floor of their Hillside Avenue home to make life easier for their 12-year-old son, Tom, who has Cornelia de Lange syndrome.
After setting up the Making Room for Tom appeal, they reached their target amount of £30,000 just before Christmas, but in a cruel twist of fate, just days later, they received a quote from the builder to say the work was going to cost an extra £17,000.
Now, the work which had been scheduled to start early this year has had to be put on hold.
Jim, 39, said: “We have hit a bit of a stumbling block but, unfortunately, that is the nature of this because they could only ever give us an estimate of what the cost would be.
“With the increase in VAT and other things, it’s more expensive than they first thought, so, unfortunately, we have had to put the refit on hold for now.”
Tom’s condition means he suffers with a host of medical conditions, including problems with his mobility.
Currently, his parents have to either carry him up and down stairs or bump him up and down on their laps.
Back in November, Tom was named the Herald/Gazette’s Courageous Youngster of the year, after winning the category at the annual Community Stars awards.
He was nominated by family friend Caroline Morley, who described him as an “inspiration”.
The home refit was intended to create a downstairs bedroom and specially-adapted living space for Tom, to make the whole family’s life easier.
Adding to the family’s woes is that on Christmas Eve, Tom broke his elbow, which is making manoeuvring him even more difficult. He has also been in and out of hospital several times, suffering from severe abdominal pain.
Jim and Debbie, 41, have already been given a £30,000 grant from Worthing Council and the Making Room for Tom appeal last year collected £30,000 – the total of £60,000 was the original, estimated cost of building work.
The couple, who have two other children, Joseph, 10, and Isobel, seven, are probably going to restart the Making Room for Tom appeal, to help raise the additional £17,000.
They have also applied to West Sussex County Council for a top-up grant. See www.makingroomfortom.co.uk to donate to Tom’s fund. The family can also be emailed at firstname.lastname@example.org