A DAD has described the devastating moment a year's worth of intensive research was proved correct – that it is unlikely his daughter will live beyond her teens.
Joe Day was convinced that four-year-old Lilly had Ataxia telangiectasia (AT), an extremely rare terminal disease that doctors find hard to diagnose.
On November 5, his family's worst fears were confirmed.
Mr Day, 37, a team leader at Rent4Sure in Whitfield, said: "I've spent the last week having nightmares. It still feels very surreal now, dream-like.
"My life has been changed forever. It will be spent as a carer for my daughter.
"She will never have a boyfriend or a social life. In the next few years she'll be wheelchair-bound and lose all use of muscles.
"It will lead to a premature death. Most people who are diagnosed don't live beyond their teens. It's horrendous. I'm devastated."
Lilly is only the ninth person in the UK to be diagnosed with this particular strain of AT – known as MR-E11. Mr Day explained why the disease is so uncommon.
He said: "It's particularly horrific because it's so rare – it doesn't have the same kind of funding as other conditions.
"The only way it can come about is if two people come together with the same mutated gene.
"The chance of me and my wife Viviane meeting is so small. She's from the South of France. You would have more chance of winning the lottery."
The couple now face a painful two-month wait to find out if their daughter Melissa, nine, also has AT.
Mr Day, of Lydia Road, Deal, told the Express that Lilly had "always been a bit wobbly on her legs".
He took his daughter to a paediatrician when she was two but the doctor could find nothing wrong with her.
Last year, Mr Day and his young family emigrated to New Zealand to start a new life.
But when Lilly was at nursery, a member of staff again commented on the youngster's "wobbliness".
At this point Mr Day threw himself into finding out what was wrong with his little girl.
He and his wife discovered a young girl in East Sussex who had the same symptoms as Lilly. From this point he was convinced his daughter had AT. The family moved back to Britain due to the financial strain of treating Lilly's condition in New Zealand.
And on bonfire night a "world renowned" expert finally confirmed the diagnosis.
Mr Day said: "I was angry towards my paediatrician. I've lost a year of Lilly's life."
The turmoil of the last few weeks for the family is impossible to imagine. But Mr Day was back at work when he spoke to the Express last week.
He said: "The reason I seem quite calm is partly because if I don't retain some sense of normality then I'll probably fold.
"As a father I've a duty to stay as strong as I can. It's the only way I get by."
Mr Day has changed his diet and shed three stone in recent weeks as he trains to run the Brighton Marathon to raise money for Ataxia UK.
He said: "I want to try and have as much of a positive outcome of the inevitable as I can. Ultimately, I've got to commit my life to raising awareness of AT. Lilly's life will be short. To what extent we don't know. For me, I'm thinking about other things. I'm living in hope."
The Express caught up with Joe and Lilly at a fundraiser held at The Cricketers pub in River on Saturday. If you want to sponsor Mr Day in his bid to raise £3,000 to run the Brighton Marathon, visit www.justgiving.com/Joe-Day1