katie's story

Katie was 18 months old when she was diagnosed with Neurofibromatosis Type 1, a genetic condition that causes non-cancerous growths to grow along the nerves. Aged nine a growth was found at the top of Katie’s spinal cord.

Katie had several rounds of chemotherapy and radiotherapy but on 20th August 2015 she died at Little Havens Hospice, aged 13.

Little Havens patient katie with her sister

“When you’ve got a poorly child you think you’re the only one who can look after them but we could take her to Little Havens and say ‘there’s her medicines, there’s her feeds, there’s this, there’s that, love you bye.’ You leave knowing she couldn’t be in any safer hands. It’s like having another mummy around, or lots of little mummies.

“In Katie’s final days they didn’t just look after Katie, they looked after me and all my family. They made sure I ate and drank regularly and Katie was never left on her own for one minute.

Little Havens Patient Katie in bed eating

“In the five years that Katie had been going to Little Havens though I had never thought about the Woodland Suite.

“It wasn’t kept secret, it’s just something that you don’t think about until that time that you need it. Having the Woodland Suite was just amazing, magical and special because it meant that after Katie had passed, which was beautiful in itself, I could spend that time with her until I was really ready to let her go. That time was so valuable because the moment they’ve passed you’re not ready to say goodbye, they’re your children.

“Little Havens needs to carry on for years and years and be supported by as many people as possible because it’s such a special place and certainly not what you think. It’s a home from home, better than that because not only are the children taken care of but families as well. I would like to spend the rest of my days making sure that Little Havens can carry on because it changes lives. It allows lives to be as good as what they can be.”

Dee, Katie’s mum

Dee tells us how her 13 year old daughter, Katie, spoke openly about her end of life wishes, from where she wanted to die to where she wanted her ashes scattered in this video.

A Little Havens mum in the bluebell woods

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