Children’s Hospice Week takes place between the 21st and the 27 May. It was created to make more moments that have meaning, and to raise awareness, as well as funds, for the 49,000 children that live across the UK with life-limiting health conditions, in addition to the life-line services that show support towards them. That's why we are bringing awareness of a few incredible stories of the children that reside in these hospices, and of the hospices that do such excellent work in supporting, and enriching these children's lives.
Penny Morris's story
Penny Morris goes to the South West children's hospice for breaks throughout the year along with her Dad, Jon, siblings, Michael and Rosie, and Mum, Nicky, for whom the hospice has turned into a fundamental element of their family life.
A mere 4 years old, Penny endures three sorts of conditions, a combination that is extremely rare and she is one of just five children in the world that suffers with them. Penny has Cockaynes syndrome which causes dwarfism in addition to premature aging, Xeroderma Pigmentsum Type D which significantly affects her body's ability to fix damage caused my ultraviole light. This means that she is incredibly sensitive to Trichothiodystrophy and sunlight that can result in brittle hair as well as varying other issues. Penny also suffers visual impairment, which is fed through a gastrostomy and has various other symptoms that make her care incredibly complicated.
The condition that Penny has is life-threatening and life-limiting which means that when she becomes poorly with any sort of illness or infection, this can be a significantly worrying occasion for her family. It is imperative that Penny has white blood cell infusions every two weeks that are administered by her parents which help to heighten her immunity. The low immunity of Penny means that it is dangerous for her to be around other children at play areas, parks or swimming pools as she is constantly at risk of being infected.
Penny and her family have been going to Little Harbour, where mum Nicky and Dad Jon found it difficult to give the complex technicalities of caring for their daughter to the hospice's Care Team. Nevertheless, once they did hand the reigns, the team gained their complete trust:
Mum Nicky said,
We have complete faith in the Care Team, they are absolutely brilliant and I know they will call us if they need us in the night. When we are staying at Little Harbour I get the most sleep I’ve had since, well - since Penny was born nearly 5 years ago.
Older siblings Rosie (11) and Michael (9) also stay at Little Harbour for the short breaks and look forward to the visits as much as the rest of the family, counting down the sleeps until their next stay.
What's also heart-warming and faith-building, in the care system, is the way the older siblings Michael (9) and Rosie (11) were made to feel welcome. They had a wonderful stay doing activities and going on trips with a designated "Sibling Team", and entertaining themselves with other siblings that have similar family circumstances. This care services acknowledges the bigger picture.
Mum Nicky spoke of the advantages for the entire family during their trips to Little Harbour:
"We know that Penny’s condition is degenerative so we will need the services of Little Harbour more and more into the future but right now we come here to make memories and enjoy special time as a family all together.”
Dad Jon said,
Little Harbour is an incredible place - it’s like a hotel for children. If we could live here all the time we would. The children love it, we love it and the staff are incredible – they are always so happy and smiley, it’s amazing.
Defined as an incredibly social child, Penny, apparently adores all that is available at Little Harbour, including the soft play, sensory room, visits from Dennis the PAT dog, in addition to music therapy where, in her finite session, her amused giggles could be heard from the other side of the hospice!
Incredibly appreciative of CHSW for the support and care they serve at Little Harbour throughout their visits, in addition to when they're back home, Dad Jon praised the institution, saying:
“It’s amazing that this is all free and for us on our doorstep, it takes a lot of the worry away and even when we aren’t staying we can always call Little Harbour if we are worried about Penny’s condition or medication. They are like our extended family.”
Stanley’s mum Mari spoke about her family's journey with Children’s Hospice South West to date:
“Stanley was diagnosed with Sanfilippo Type A, the most progressive and regressive type of the disease, when he was 16 months old. His doctor then referred us to Little Harbour when he was 2 years old. Although Stanley is very able and his needs aren’t great at the moment we have started visiting Little Harbour for short breaks and to enjoy quality time together as a family.
Little Harbour is like a second home and Stanley has been enough times that he knows the staff, mealtimes, his room – he really loves it, we all do. For a period of time we were visiting Great Ormond Street hospital every two weeks, this was incredibly intense but coming to Little Harbour meant we could just be a family and do some lovely things together.
There’s just not a lot of support in Cornwall for siblings like Willow but at Little Harbour the Sibling Team are a great support and even when we aren’t there the newsletters we receive from them, the phone calls, and the contacts they share are invaluable. It is great to know that there is someone there for Willow, and Orson, as well as for Stanley.
We have used Little Harbour in a few different ways. The children and I stayed for a few days while Ross spent some time doing work on the house making it more suitable for Stanley. On a different occasion Ross and I stayed for a night in a hotel just the two of us while the children were at Little Harbour and then we came back and spent the rest of their stay with them. We just don’t get many opportunities like that and we needed that time together. When you are constantly in the throes of dealing with situations you forget what it’s like to do normal things and it can put a strain on family life.
The team are just brilliant and it is fantastic knowing that if we are staying over a weekend and Stanley isn’t well there will be a Doctor there to help with medication and other things that can become stressful when you are at home.
Two years ago Little Harbour put us forward for a trip to Disneyland Paris run by another charity. It was amazing, all I had to do was have our passports ready and everything else just seemed to be arranged for us. Stanley had a fantastic time, as did Willow and it was just after Orson was born. To have those memories of Stanley being so able and enjoying it so much is wonderful but without the team at Little Harbour we would never have been on a trip like that.”