Nicky Worrell who runs a busy farm with her husband, is mum to Harry (4) and younger sister Grace.
“When our daughter decided to make an appearance on April 30th 2015, we got a shock when the doctors rattled of a list of issues as long as your arm,” said Nicky.
“She needed to be transferred to Sheffield Children’s Hospital, which is about two hours away, and spent the first four months of her life there before she eventually came home. She has been to theatre seven times and has an undiagnosed syndrome, so we are still waiting for lots of results and things.
“Life is pretty hectic with Grace. She keeps me on my toes. Sometimes she forgets to breathe, so I have to be with her all of the time. Andy’s, the children’s hospice at St Andrew’s, has been very helpful to me. It gives me time to myself, which doesn’t often happen, and the stimulation Grace receives when she visits is very good for her.
“The staff are amazing with her. They know all of her quirks inside out. The sensory room is so helpful because Grace has vision impairment issues which we haven’t got to the bottom of yet, so it’s super important because I don’t have that sort of equipment at home.
“She comes once a week, which I originally didn’t want because I thought I was Super Mum and could do it all – which I really can’t. When she comes, I get to spend the day with Harry. He gets my full attention for the whole day, which without the hospice, would not happen because there is no one else who can look after Grace. I’m the sole carer; obviously, Daddy is very busy on the farm, and I’ve recently had to give up my job.
“I was due to go back after maternity, but I didn’t because Grace wasn’t well or strong enough to attend a mainstream or special needs nursery. So I’ve had to quit my much-loved job for the time being I hope, in order to care for Grace. I am ABLE to give her the best, and the children’s hospice is ABLE to give her the best. We need to do this in order for her to move forward.
“Grace is making progress, slowly. She’s heading in the right direction; it’s just time.”