There is little pain to compare to that of the death of a child.
But one year on from the death of their two-year-old granddaughter Lexie Harrison, who suffered a rare metabolic disorder that affects just one in 50,000 children, Paul and Tracy Norton are being helped to come to terms with their grief thanks to the support of the South Yorkshire children’s hospice that cared for her during her short life.
The couple, who are both 48, looked after Lexie in their own home from when she was just 11 weeks old as her parents were unable to care for her.
They soon noticed problems with her eyesight and, at the age of nine months, Lexie was diagnosed with Zellweger Spectrum Disorder, a rare condition which left her blind and hearing impaired.
Doctors initially said Lexie would not live past her first birthday - leading Paul and Tracy to get in touch with Bluebell Wood Children’s Hospice in North Anston, near Sheffield.
Lexie became a regular visitor to daycare sessions at the hospice, receiving support such as music therapy.
Tracy said that, despite her difficulties, Lexie made the most of her short life.
“She was an exceptionally happy little girl. She was very giggly and she loved to be tickled,” she said.
“Paul used to do an impression of the doctor and she used to cry with laughter.”
Paul and Tracy communicated with Lexie through basic sign language and she could form certain words.
The pair both gave up their jobs to concentrate on providing her care, and even sold their house to move to a more suitable rental property.
Tracy said: “We did everything we could to give her a happy life.
“When we had the initial diagnosis was when we had first contact with Bluebell Wood. She would go for day care and that was a really positive experience. The staff were fabulous.
“She died when she was two-and-a-half, but she packed five years into those two-and-a-half. She would sleep for an hour and then she would be awake.
“She lived at home and didn’t really require a great deal of treatment.”
Shortly after her second birthday, Lexie began to suffer liver problems and started having seizures.
She underwent two operations in 2013, but she was unable to recover after complications with the second one.
She was taken home in an ambulance arranged by Bluebell Wood to spend her final moments at home.
Lexie passed away peacefully while sitting on Tracy’s knee on June 18, 2013.
Following her death Paul and Tracy, from Walkeringham near Doncaster, took Lexie’s body to a special room at Bluebell Wood called the Forget Me Not suite, a special room for bereaved families where they can say their last goodbyes.
Tracy said: “It was such a precious time and helped us come to terms with the fact she was gone.”
Tracy said they are also happy to have had extra time with their granddaughter after the initial diagnosis predicted she had just three more months to live.
“It was fantastic, but you always felt you were living on borrowed time and you didn’t want to waste a second,” she said.
The pair still receive regular bereavement counselling at the hospice and also act as ambassadors for the charity, raising more than £3,000 in Lexie’s memory and also giving talks to volunteers.
They said they would be forever grateful for the support they have received from the charity.
Claire Rintoul, chief executive of Bluebell Wood, said the charity has to deal with heart-breaking stories like Lexie’s on a daily basis.
Covering South Yorkshire, North Derbyshire and parts of Nottinghamshire and Lincolnshire, the hospice which opened in 2008 needs to raise £3.5 million a year from donations to stay open.
The hospice provides services to around 200 families at any time, from daycare sessions to end-of-life care, as well as bereavement counselling.
Claire said that, despite the recession, the hospice has incredible support from the local community, as well as from families who have needed to use its services.
“Every day you come here you are surrounded by people raising money for us. Sometimes it is families who have lost children,” she said.
“That is very moving. We also have about 350 volunteers and we just couldn’t do it without them.
“The community has really taken us to heart and people are incredibly generous.”
She said the charity has to strike a balance between dealing sensitively with tragic situations while providing a fun environment for children to enjoy.
“You have to make every minute count. It can be really hard to strike the balance between the sadness and the joy of making amazing memories.”
The hospice has a number of fundraising campaigns throughout the year and has recently been encouraging celebrities to get involved with ‘Superhero Selfie’ photos on Twitter.
Designed to promote the amazing work of its volunteers, the campaign encourages people to take a picture of themselves wearing a superhero costume.
Supporters including actress Linda Robson, Emmerdale’s Natalie Anderson and EastEnders’ Jake Wood have all joined in the fun.
Last week, staff and children at the hospice got in costume for a Heroes and Villians Day, with costumes including Spiderman, Superman and Batman.
To donate in memory of Lexie, visit http://rememberinglexie.muchloved.com.
To find out more about the work of Bluebell Wood, visit www.bluebellwood.org.