By James Broadhurst

Last updated at 08:09, Friday, 16 November 2012

A young mum has spoken of the heartbreak of losing her cherished daughter to a rare genetic disease.

Isla was one of the longest surviving children with the disease

Isla Holliday, 4, died in her mother Kelly’s arms after a long battle with illness.

Isla was diagnosed just two months after she was born with the degenerative Schinzel-Giedion syndrome.

Her parents, Kelly, 33, and Phil, 39, of Calva Road, Seaton, near Workington, were told by doctors that she had just two years to live. Her death at the age of four made her one of the longest surviving children to carry the disease.

Now Mrs Holliday has spoken of the joy Isla brought to their lives and the happy memories which will sustain them.

She described how, on the evening of November 1, Isla became ill and had to be rushed into hospital after her kidneys started to shut down.

Doctors told the couple there was nothing they could do for her.

It was Mrs Holliday’s wish that Isla should be allowed to pass away at home with her family. She died in her mother’s arms at just after noon the next day.

“I am heartbroken,” said Mrs Holliday.

“She was just a massive part of my life. I just want to let everyone know how much I loved her.

“I am just wondering whether I am ever going to be the same person without her.”

The couple tried to give Isla as normal a life as possible, as they knew her time was short. They took her on holidays to London, Lapland, Paris and Spain.

Mrs Holliday said: “I always treated her no differently to my little boy, Isaac. I wanted her to do everything that other kids could do.

Mr Holliday added: “We didn’t know how long she had so we tried to do everything we could.”

They both also have happy memories of their time with her.

Her father’s last memory was giving her a bath just before she went to hospital, with her acting like her normal self in the bath tub.

He added: “I loved coming home and kissing her, giving her Eskimo kisses and I loved just everything about her.

“She was so special. She would just melt your heart by looking at her.”

Isla was taken in a pink coffin by horse-drawn carriage to her funeral at St Mary’s Catholic Church in Harrington, then Distington Hall Crematorium.

Mrs Holliday’s cousin John Barnes designed a personal order of service booklet for the funeral, which included family pictures of Isla and poetry written by family members and friends.

Isla’s parents said they were overwhelmed with the support they have received, with people sending them flowers, emails and messages on Facebook.

Mrs Holliday added that they had received more than £1,000 in donations for the Rainbow Trust, a charity which provides support to families who have a child with a life-threatening or terminal illness.

First published at 08:07, Friday, 16 November 2012
Published by http://www.newsandstar.co.uk