A Norwich family is in a race against time to provide independence for their 10-year-old son, who in 18 months will not be able to walk, eat, or hug his parents.
William Hagg was diagnosed with muscle wastage disease duchenne muscular dystrophy (DMD) when he was eight years old - four years after most diagnoses are made.
The rare condition is life-shortening, and it is unusual for someone with DMD to live beyond their 30s. But by the time children with the disorder turn 12, they are usually confined to a wheelchair and the condition deteriorates.
William, a Norwich Free School pupil, already has a manual wheelchair but will soon need a powered one. However the NHS cannot issue one until adaptations are made to his Hall Road home - where he lives with parents Vanessa and Gary, and four-year-old sister Eleanor - prompting an ambitious fundraising bid.
Mrs Hagg, 42, said she had been taking William to the doctor since he was three and he was diagnosed with a variety of conditions, until finally a simple blood test confirmed he had DMD.
Because of the late diagnosis 51-year-old Mr Hagg, a police sergeant, said they had little time to raise the £35,000 they need. He said: "Because of William's condition his room is his world, he can't go out and play football, can't run around. I refer to it as his cell.
"Charities don't support you when it comes to bricks and mortar because it's seen as putting value on their house. Everybody is giving all these huge sums of money to big charities, but what about the local lad, the next door neighbour?"
While William can currently get around at home with a stick, his condition will get markedly worse in the coming years.
Mrs Hagg, who works for the UK Holiday Group, said: "I've always been very honest with him. He's got the worst one and it will hit his heart and his lungs. Although he's not got that much strength physically, he's one of the strongest boys I know. Very determined. I've never seen him shed a tear about it."
William, who is described as a petrolhead and loves gaming, is also a talented Norwich City Powerchair Football club player.
Mrs Hagg said: "He absolutely loves it and his aim is he wants to play for England. He asks me 'will it ever be part of the Olympics?'.
The plan is to adapt the family home so William can retain his independence and be part of the family. Mrs Hagg said "I would never want him just stuck in a room."
And the Haggs had planned meticulously for their son's future by buying the home they previously rented from which he had clear, accessible routes to his planned high school, Notre Dame, or to Norwich City College should he want to go there. Or even get to the local McDonald's with his friends without needing help.
But the family cannot get the wheelchair without the adaptations, and although they could ask for some help from the local authority, modifications would be basic and would not allow William to be independent in the future.
While some families have been able to remortgage their homes to make the changes, this is not an option for the Haggs. But their income is not so low that they can access vast amounts of help.
Mrs Hagg said: "We are one of the people stuck in the middle."
The work would include giving William a downstairs bedroom with a wet room, widening all the doorways, a new entrance, and charging areas for his wheelchair.
The plans have already been drawn up and permission granted, but the missing part is the funds.
Already a masquerade ball has been arranged for June 1 at Sprowston Manor, and William is set to be one of the judges at the Skeyton Goat classic car and bike show on May 19, with proceeds going towards his fund.
The Make a Wish Foundation has also promised to grant William a wish, and the youngster put forward three possible wishes with the prospect of one being granted.
The first, a sleepover with popstar Ed Sheeran. The second, to see Chris Evans at CarFest, or finally to go to Italy to visit Lamborghini or Ferrrari.
Mrs Hagg said: "His home is so important to him, he said to the Make a Wish Foundation his most important thing is his family, and his gaming. We just want him to feel safe."
- To buy tickets for the masquerade balls, donate raffle prizes, or find out more search Willz Masquerade Ball on Facebook, or to donate click here.
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