I’m Courtney and Esme is my daughter. She was well when she was born in February 2015 but in December that year, she fell poorly. The doctors thought it was a virus but she wasn’t eating or drinking and kept whimpering, trying to sleep on my shoulder. I got up on the morning of the 23rd and she wasn’t moving at all, her breathing was really shallow and she was very pale. As I picked her up her limbs flopped, her head dropped and I just kept saying “Esme wake up!” but she didn’t respond.

I phoned 999 and they sent two ambulances and worked on Esme in our home, giving her adrenalin shots and nebulisers, for one hour and eleven minutes (I remember the precise details clearly). They rushed her to the High Dependency Unit in Blackpool where the consultant said they had to get her to specialist intensive care in Manchester.

She spent two months there and I was told more than once that she probably wouldn’t be alive in the morning. She was the ‘mystery child’ who wouldn’t wake up.

Esme has a diagnosis of Cerebral Palsy, but it’s just the closest name they have for her condition; they don’t really know what happened. Before she got ill she was starting to walk, calling my name, but all that has gone. Esme can’t do anything for herself – cannot lift her head, can’t smile. I wondered how I could love her when she could no longer love me and I needed help; someone to support me and share the endless responsibility.

I found those things at Brian House.

I thought accepting help from a hospice it meant I accepted Esme was going to die. But I discovered it wasn’t like that at all – Brian House is where Esme comes to live. She loves the activities and trips out to places I could never take her on my own. Brian House gives us a couple of nights’ care a month – two nights when I can have a good sleep, not having to deal with her seizures. It gives me the strength to carry on.

Esme and I send our love. Thank you for supporting Brian House.


This story was published in conjunction with Together for Short Lives’ Children’s Hospice Week 2020.

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