THE brother of a baby girl who died of a rare disease at just 23 days old has given up his favourite biscuits to raise money for the hospital unit that cared for his beloved sister.

Mark Putley, 12, from Coxheath, near Maidstone, lost his sister Alice to Edward's Syndrome on April 16 this year.

Mark, his nine-year-old brother Howard and his parents Andrew and Sarah, had less than a month with the tot, who was born with an extra 18th chromosome, causing problems in her heart, lungs and digestive system.

Now Mark, a pupil at The Cornwallis School in Linton, is determined to raise funds for the special care baby unit at Maidstone Hospital by giving up Custard Creams for three months. He has been known to eat up to 15 in a day.

Alice was born on Monday, March 24 weighing just 3lb 14oz. Although she seemed healthy, it was soon discovered the tiny baby would live for only a short time.

"The hospital broke the news to Howard and me gently," said Mark. m"I didn't cry at first. I looked at Howard for a minute and just stared into space. Then I turned to look at my dad and I started to cry.

"The nurses tried to cheer us up. They made me a birthday card with Alice's footprint on it and I got a little cake. They gave my family so much love and support."

Alice remained in the unit for 17 days before her family took her home for what would be her final six days.

"We took Alice home in the end because they couldn't tell us weeks or months and she was getting weaker. We didn't hide her away.

"We took her round the village and to the coast," said Mr Putley. "We would rather people talk about Alice and have known her, than her to be the baby nobody saw."

Alice passed away peacefully in her father's arms with her family by her side. She was buried in Linton.

"When she died she had her eyes open and she was looking straight ahead. It was like she was looking at us," said Mark. "She was lovely. I will always remember her little squeal. Most babies are loud but she just squealed. It was cute."

The family have already raised £400 for the unit by asking for donations at Alice's funeral. Now Mark wants to raise an extra £80.

• Anyone who would like to sponsor Mark can do so by writing to 6A Hanover Road, Coxheath Maidstone, Kent ME17 4QH.