With her bright blue eyes and stunning golden hair, Emma Parkinson was as pretty and happy a girl as any parent could wish for.

But at the age of just three she was diagnosed with a terminal illness which would see her pass away just a few days short of her 11th birthday in January last year.

Twelve months on, her parents, Jane and Stephen Parkinson, of Leatherhead Road, Great Bookham, have paid tribute to their daughter and spoken in support of the charities which helped her through her short life.

Until the age of three, Emma was just like any other child – but then she started to have seizures.

When her parents took her to hospital she was diagnosed with Late Infantile Batten's Disease, a very rare but fatal genetic and degenerative condition.

Mrs Parkinson explained: "She was just like every other child up until that point. Then her balance, vision, mobility and mental and physical ability deteriorated quite quickly."

Despite her ailments, Emma was a loving daughter with a strong will who was proud of the arrival of younger sister Joy in December, 2003.

Mrs Parkinson said: "They were very fond of each other. As Joy grew a little older she was very good with helping me with Emma's care."

Speaking of Emma, she said she always had a smile on her face, a real zest for life and loved being with people.

"She was very determined to be around for as long as possible.

"In July, 2007, she nearly died and specialists said she probably wouldn't survive. But Emma wanted to be around for Christmas and was determined to choose her time."

Because of the severity of her condition, Emma required 24-hour care. But the Parkinson family received help and respite through such organisations as The Children's Trust at Tadworth, the Batten Disease Family Association and The Rainbow Trust.

One of the most important organisations providing care was CHASE, a children's hospice service which provides respite care for parents at its base in Guildford.

Mrs Parkinson said: "If we hadn't had the hospice service I wouldn't have been able to care for Emma as well as I did because you get so exhausted when you're caring for somebody day and night.

"I felt like I could just be her mum there, rather than her nurse, too."

Following Emma's death, the family were able to see her at the hospice, something Mrs Parkinson says was key to Joy understanding what had happened to her sister.

And the family still maintain a close relationship with the charity, which recently treated them to an ice skating day at Hampton Court.

Mrs Parkinson believes it is important to help CHASE because the charity is reliant on donations and receives no Government money.