Faye’s story

Faye Nickels spent her last days at Bluebell Wood. Her mum Carol tells her story.

CNV00006-1-1Faye was diagnosed with kidney disease when she was just 13-years-old.  After two years on dialysis, her granddad donated a kidney to her and she went into hospital in December to have her transplant.

A week after her transplant she started having major seizures and she was put into an induced coma. No amount of medication could stop the seizures she was having which were non-stop (called status epilepticus).  Following a muscle biopsy we were told that she had a severe mitochondrial disease, for which there is no cure.

She was in a coma for four months whilst the doctors tried to stop the seizures she was having but no amount of medication worked.  After four months on such strong medication, her organs started to fail and we then knew that she was not going to recover. The doctors told us about Bluebell Wood, and I was really worried about whether to come here or stay in the hospital for Faye’s final days.  As soon as I walked into the hospice, I knew this was where I wanted her to be.

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In intensive care, you’re only allowed two visitors at a time, there’s machines beeping all the time, and there’s no fresh air.   I just wanted Faye to have some peace.  The first thing I did when we got to Bluebell Wood was to take Faye out into the garden, which was just wonderful.  Through the night, my brother played guitar to her, and her dog came from home to be with her.

Faye died at 4am the next morning. We all stayed at Bluebell Wood for two and a half weeks afterwards in the Forget Me Not suite.  This meant that I could be near Faye, and see her whenever I wanted. I could also sleep knowing that Faye’s little sister, Mollie, was safe and cared for.

Bluebell Wood helped me with all Faye’s funeral arrangements, and provided counselling for both me and Mollie. If I’d have stayed in hospital and then gone straight home, I know I wouldn’t have coped.  Bluebell Wood was my bubble to help me adjust to life again.

Faye’s sister Mollie goes to the sibling group, which really helps her.  There she gets the chance to talk to other children who’ve lost a brother or sister, and she’s not on her own. Without Bluebell Wood, I don’t know what we would have done.