The Jessie May Children's Hospice at Home charity has launched its Christmas appeal.
The charity says that in a year during which we’ve all had our fair share of doom and gloom, it is asking people to bring joy and laughter into families’ homes.
Its appeal follows real-life Jessie May family, the McArthurs. Mum Laura and Dad Al share the story of son Archie, who was born prematurely at 23 weeks, severely deprived of oxygen.
Archie has since been diagnosed with cerebral palsy, a lifelong condition that affects his movement and co-ordination, and due to the severity of his condition it is unlikely that he will reach adulthood.
Archie spent the first 11 months of his life in Bristol Children’s Hospital, but thankfully, after having two life-saving operations, he was allowed home in time for his first birthday.
Laura said: “It was a day that we never thought would arrive, and then suddenly it was here. We were allowed to take him home, to be a proper family.”
However, this was only the beginning of their journey. The transition from hospital to home for a family with a life-limited or terminally ill child is a tough one. Archie was still attached to many wires for monitoring, was fed via a tube, had a tracheostomy to help him breathe and was still on oxygen all the time.
His loved ones didn't know how they were going to look after him - but that is when the charity stepped in.
24/7. They didn’t know how they were going to do it with such an unwell child.
Laura said: “Thankfully Jessie May had been coming to visit us in hospital, to support us, since Archie was six months old.”
Jessie May Nurses were able to help with Archie getting home and settled in, and provided his mum and dad with all the information they needed about their community and the services that could offer support.
Laura said: “Most importantly, though, they would arrive with a huge bag of colourful toys. Coming home to find him draped in a bright pink feather boa, having the time of his life is one visit we will never forget!
"I’ll never forget that sight - I felt like he was so loved.”
Jessie May specialist palliative nursing is 100 percent free to families, but the Bristol-based charity relies on voluntary donations.
Jessie May chief executive Chris Roys said: “During the first national lockdown back in March we had to adapt our services greatly, meaning that we had to prioritise those children and families who needed the most urgent medical treatment.
"Our specialist nurses would go into families' homes covered head-to-toe in PPE.”
With the nation currently back in lockdown, the service is needed now more than ever for families across the South West.
“The usual festive fundraising that we would see at this time of year from our community is practically non-existent, and so to be able to continue supporting these families over Christmas, we can’t do it without help,” Chris said.
Laura added in a message to potential donors: “Jessie May nurses are our everyday angels and we couldn’t imagine life without them, but they only exist because of people like you who support the charity, which means that you are so important to our family.”
Donations of £5 to the Christmas appeal can be made by texting JESSIEJOY to 70085, and donations can also be made via www.jessiemay.org.uk/christmas-donation