Little Holly Clarke has lost her brave battle against incurable Batten's Disease.

The six-year-old died with her parents Darren and Shirelle at her bedside in Martin House children's hospice in Boston Spa just after midnight in the early hours of Saturday.

Her eleven-year-old brother, Daniel, had cuddled his sister goodnight just moments earlier before going to bed in the hospice where the family had been staying since the previous Saturday.

Darren, 35, said: "We were sat by her side stroking her face and holding her hands. Dan had just been lying down by her side cuddling her. It was as if she had been waiting for his cuddle because he had not cuddled her all day. It sounds strange but it was beautiful to see her go so peacefully.

"She was sent here for a reason and one of the reasons was to raise awareness of Batten's Disease and of children who suffer. She was such a gorgeous little thing that everyone couldn't help but love her. She drew people in. She was adorable and everyone loved her. Grown men would cry when they saw her."

Holly, from Grove House, Bradford, died just five days after her grandmother, Darren's 57-year-old mother Anne Clarke, who will be laid to rest on Tuesday. Mrs Clarke, of Kingsdale Drive, Grove House, died from a heart attack on May 29 after battling cancer for 15 years.

Darren said: "My mum had struggled to walk for such a long time and Holly could not walk at the end. I can imagine them running around together now and playing tricks on each other."

Holly, who also could not talk or see because of the disease, had spent the past three months battling chest infections and was taken into Bradford Royal Infirmary for an intensive course of antibiotics to fight pneumonia several weeks ago.

But within a few days of being discharged she was taken into Martin House after her condition deteriorated and she finally succumbed to pneumonia.

"Holly meant the world to Daniel," said Darren. "He looked after her so much and would help her. He has been a star."

Darren and Shirelle set up the Holly Clarke Batten's Appeal shortly after she was diagnosed with the rare fatal illness, which leads to the progressive deterioration of the brain and nervous system, two years ago.

They have vowed to continue fundraising through the appeal for Marie Curie Cancer Care and Martin House.

Shirelle, 35, said: "I really want to thank all the people who have been there for us and who have helped to make life easier for Holly by fundraising for things like a bike and walking frame. It made a difference to us and to Holly and I am sure she knew about it.

"Holly was a feisty little girl full of energy and life. She was a very strong and contented child. She was always smiling.

"She changed my life and made me see things differently. I will miss her loads."

Shirelle praised staff at Bradford Royal Infirmary and Martin House and the Community Nursing Team who helped Holly throughout her illness.

Shirelle said: "It was peaceful when she passed away. I wish she hadn't gone but I know now she has gone to a better place."

Holly touched the hearts of everyone

With her sunny smile and bright blue eyes little Holly Clarke captured the hearts of people across the world.

From the moment she was diagnosed with incurable Batten's Disease, her parents Darren and Shirelle devoted themselves to finding a cure and to making every day of their daughter's life special.

Holly was diagnosed with the killer disease when she was just four years old.

The inherited illness, which affects about 100 children in the UK, leads to the progressive deterioration of the brain and nervous system causing seizures, blindness, loss of muscle co-ordination, mental deterioration and dementia.

Faced with the knowledge of what would happen to their daughter, the couple, of Grove House, Bolton, Bradford, scoured the globe in hope of saving Holly and when they set up a trust fund to raise money for specialist equipment and treatment, people across the district sprang into action to organise fundraisers.

Pop Idol star Danny Tetley, who helped to host charity nights for Holly at the Railway Social Club in Wakefield Road, summed up Holly's magnetism last year when he said: "Holly is a lovely little girl. You just have to look at her and your heart melts."

From schoolchildren to sporting giants, pub punters to pop idols people across the district warmed to Holly and wanted to help. Complete strangers who had only ever seen Holly's picture in the Telegraph & Argus were moved by her plight and tens of thousands of pounds were raised.

Children at Holly's former school, Grove House, dressed up as bumble bees to raise cash to buy a specialist bicycle for their friend. Youngsters from the Shotukan Karate Club at St James's Church in Beaufort Grove, where Darren and Holly's brother Daniel practised, held a sponsored kick to raise hundreds of pounds.

Bradford's sporting stars such as Donovan Smillie, Nadeem Sadiq, Joe Johnson and Lewis Emanuel were all touched by the little girl and her parents' fight for a cure.

Holly even inspired burly Bradford Bulls players to model pink charity wrist bands which were sold for the Holly Clarke Batten's Appeal.

When Holly was screened to trial a pioneering treatment in New York which it was hoped would halt her disease's cruel path, business tycoon Sir Richard Branson paid for her flight after being approached by cabin crew who had met Holly on a flight to Florida in 2004 organised by the Make A Wish Foundation.

But time finally caught up with Holy and her family were dealt a devastating blow last August when they learned she was too ill to undergo the treatment.

Even at Holly's bedside in Martin House children's hospice in Boston Spa, Darren and Shirelle, who also have an 11-year-old son Daniel, knew their daughter's life had not been in vain and vowed to continue fundraising for the hospice and for Marie Curie Cancer Care. They know Bradford will never forget their special little girl.

e-mail: fiona.evans @bradford.newsquest.co.uk