A Watford business is donating a defibrillator to a charity that helps children with learning difficulties.

Charlotte Donald, 28, who works for Vinci, in Imperial Way, campaigned to give the defibrillator to Jubilee House – a charity that looks after her niece who has Sanfillipo disease.

Tillie Mae Mawdsley, 8, was only two years old when she was diagnosed with the rare neurodegenerative disorder which stops her from speaking, eating and walking properly.

Miss Donald said: “I chose Jubilee House because my niece Tillie Mae attends there. For children like Tillie, there aren’t many places where they can go and meet other children and Jubilee House is a great place she can go after school.”

When Tillie Mae was three years old, she was one of six children chosen to take part in a clinical trial at the Royal Manchester Children’s Hospital. The trial aimed to slow down the progression of her disease and her parents, Michala, 36, and Paul, 40, believed it was working.

Many sufferers of the disease do not live past their teenage years, but so far, Tillie Mae has defied the odds and is more verbal and mobile than would normally be expected at her age.

Sadly, the trial was pulled after researchers claimed it was not showing enough signs of progress and her family are now raising money to try and secure her a place on a trial in America or France.

Mrs Mawdsley said: “Tillie Mae is full of life and she’s in a great place. We were told she would have seizures, she would be off her feet by the time she was six or seven, she would lose all speech and would be fed by a feeding tube by the age of eight.

“Well, Tillie Mae is now eight, and still very much on her feet; she can outrun me. She has lost a lot of her speech but she can still say Mummy, Daddy and Lexie – her sister’s name.

“So whilst we can say the trial drug wasn’t a cure, we believe it’s slowed down the progression of the disease – we truly believe that the trial gave her an opportunity and hope. So now we want to raise as much as money as possible to find Tillie Mae the treatment she deserves and to ensure she has the best quality of life possible.”

In the new year, Tillie Mae’s family and fundraising team will be holding a Valentine’s ball, a golf day and kid’s talent show.