A MOTHER has opened up about caring for her daughter who was born with a devastating defect that means "any day could be her last".
Faith Preece, from Haywards Heath, was born with an occipital encephalocele, meaning that her skull did not fuse, so she had brain tissue and fluid leaking out the back of her head.
Her mum Vicki was given the heartbreaking news at her 16-week pregnancy scan and was told by doctors that her daughter was likely to die during the pregnancy or at birth.
Faith was born at London King's College Hospital in January 2019, and despite her obvious brain exposure, she defied all expectations and has now celebrated her second birthday.
But Vicki says that Faith lives with complex needs and her family relies on support from hospice charity Chestnut Tree House, based in Arundel, to ensure her care needs are met.
She said: “She is severely visually impaired, hearing impaired, is very delayed, has motor impairment, is tube fed and has daily seizures.
“No one dares to talk about Faith’s life expectancy, because she has done amazing to even get this far.
“We can’t live every day like it is our last, but we almost have to, because any day could be her last.”
Throughout the coronavirus pandemic, Vicki and her family have continued to receive support from the hospice.
Vicki said: “We have received lovely care packages and visited the house. We have even had some support at home with our lovely nurses all dressed up in PPE.
“Funds aren’t unlimited when you have a child with complex needs, a lot of your time and money has to go on getting to medical appointments and new equipment, for example.
“We also never know where to take Faith, she gets sensory overload sometimes, but Chestnut Tree House help us find perfect events that Faith and the older children enjoy together.
“Because of their support, we have been to a sensory circus, a pantomime and even on the i360.”
In a message to mark Children’s Hospice Week from June 21 to June 27, Vicki said the care and support of children’s hospice is needed now more than ever.
She said: “If you’re thinking about fundraising for your local children’s hospice, then all I can say is thank you. Because of you, so many families like us have a lifeline.
“They have a break, and having a break isn’t a normal part of life for families like us. Because of you, we are not always in hospital surrounded by machines, we are somewhere that feels like home. And that is massive.”
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