Brave Ben inspires Donna Louise Trust Christmas campaign (AUDIO)
Ben Deeley was diagnosed with a brain tumour in November 2005 after weeks of balance and co-ordination problems.
He fought his illness for 15 months before dying with his family by his bedside at the Donna Louise Trust's Treetops Hospice, in Trentham.
Now Julie's story is the inspiration behind the charity's Christmas campaign, Angel Love.
Staff hope their campaign, which launched today, will help to raise some of the £2 million needed to keep it going each year.
Julie, aged 42, said: "My family wouldn't have got through what we did without the Donna Louise Trust and Treetops.
"We are devastated, heartbroken but still in one piece and that has a lot to do with Treetops, how they handled Ben, his death and us.
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"We'll always be in debt to them and do anything we can to help them."
Ben's family contacted the hospice, which provides respite and end-of-life care for children, a year after his diagnosis, and his family moved into Treetops with him on Boxing Day, in 2006.
By then, it had become almost impossible for him to live at home.
Julie said: "Ben absolutely loved the first few nights there, he thought it was far better than home. He had been determined to spend his birthday and Christmas at home and although he was very ill he managed it.
"But by Boxing Day, Ben could hardly lift his head off the pillow.
"I remember ringing Treetops in a complete state, but they were very good and let us go over straight away.
"I knew he wasn't going to see his home again.
"We spent just under six weeks at Treetops and the staff made an unbearable time bearable. We never felt like it was doctors and nurses around us.
"They didn't even stop his care after he died and I'm still receiving help 22 months on."
Julie, who lives in Rugeley, added: "All the respite children have such a good time at the hospice but not enough people realise that the staff have to raise most of the funding themselves.
"I can't stress how important this appeal is."
The trust's head of fund-raising, Melanie Mills, said: "For most of us, Christmas is a joyful time to spend with family and loved ones.
"But for so many families, Christmas is a very difficult and painful time.
"We hope that through Angel Love, we can make more people aware of the vital care and support provided by Donna Louise Children's Hospice.
"In these difficult and uncertain financial times, we are asking the public to continue supporting us in any way they can.
"No matter how big or small, every donation goes towards caring for life-limited children and their families."
To make a donation, call the charity's fund-raising department on 01782 654444.
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