Grace is a smiley, bouncy two year old and regularly visits Richard House with mum, Jade, dad, Metin, and brother Archie. Grace has an extremely rare chromosomal condition and she needs 24 hour care and supervision, day and night, which had fallen solely to Jade and Metin. Hear what Jade says about their amazing family…
“When Grace was born we knew something wasn’t right. She seemed so different to our son as a baby. When she was around five months old she was diagnosed with a chromosomal condition and so far we haven’t been able to find anyone else in the world with the same condition!
For Grace, this has meant she has never met a developmental milestone and recently we have been told she probably won’t ever be able to walk. Grace’s condition has caused her to have feeding difficulties and growth and physical issues which impact her day-to-day.
But she is one-of-a-kind and has taught us things we never knew about ourselves as parents. We have always said being parents of a child who is life-limited is difficult, but it is also one of the best things that has happened to us.
So life has changed a lot since Grace came along. We didn’t quite realise how easy life was before. Grace required around-the-clock care for the first two years of her life and we did it all on our own!
We managed and we coped, because we had to. Grace is our life but we had nowhere to go; no escape. We first heard about Richard House by picking up a leaflet and then we looked at what services they offer on their website. And we thought, this might be for us, maybe they can help us with Grace.
We first came to Richard House about eight months ago and we were welcomed with open arms. It came at exactly the right time for us. Grace’s condition can make us feel very isolated as a family. We were staring at the same four walls every day, doing the same things to care for her over and over and over again, feeling as though we had no escape.
In October last year, we first sat down with Carol, from Richard House’s Social, Therapeutic and Resource (StaR) team. She talked to us about Grace, our family and what Richard House could mean for us. She walked us around the hospice. It was nice just to have someone to talk to, who understands what we have been going through without us needing to explain.
We started off by receiving some Hospice-at-Home sessions. We had a lovely nurse come and look after Grace, with all of her complex needs for three hours at a time, enabling us to spend these hours how we liked. We could spend a few hours with our son Archie, catch up on housework or even grab a few hours rest.
Grace’s complex needs require us to care for her 24 hours a day. By just having the few hours once a week, we are able to catch our breath, and just take a few minutes to breathe. It has stopped the isolation we experienced every day.
Grace has now had a couple of weekend residential stays at the hospice. At first it was very difficult to leave her, because in our minds, leaving Grace with somebody else is a big thing, she’s our life and has been for the past three years. The staff reassured us by letting us know we could visit whenever we like and that they enjoy having the parents come in and visit.
Grace receives so much love and care from the staff when she visits the hospice. We know that ‘God forbid’ anything go wrong, they are equipped to handle it in the correct way. It gives us the peace of mind and allows us to spend some valuable one-on-one time with Archie.
Archie and Grace have such a great relationship. Archie is hands on with his sister’s day-to-day life and just loves her to pieces. We enjoy getting to spend time as a family.
Feeling less isolated and more supported is making a huge difference to all of the family.”
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