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Penny Morris photo
How Little Harbour has become part of this families life
Penny Morris' wears her beaming smile with pride despite extremely rare conditions

One family who is grateful for the support given by Little Harbour is the Morris family from Bodmin. Penny Morris visits the hospice for breaks throughout the year along with Mum Nicky, Dad Jon and siblings Rosie and Michael for whom the hospice has become an integral part of their family life.

Penny is 4 years old and suffers with three different conditions, the combination of which is incredibly rare and she is one of just five children in the world suffering with them. Penny has Cockaynes syndrome which causes dwarfism as well as premature aging, Xeroderma Pigmentsum Type D which affects her body’s ability to repair damage caused by ultraviole light meaning she is extremely sensitive to sunlight and Trichothiodystrophy which can cause brittle hair along with a variety of other problems. She is also visually impaired, fed through a gastrostomy and has other symptoms meaning her care can be very complex.

Penny and the PAT dog

Suffering with a common cold when she was five months old landed Penny in HDU with a collapsed lung. Following a variety of tests and investigations after this her diagnosis was made at the age of two.

Penny’s condition is life threatening and life limiting meaning that when she gets poorly with any type of infection or illness this can be an incredibly worrying time for her family. She has to have white blood cell infusions every two weeks that her parents administer which help to boost her immune system. Penny’s low immunity means that being around other children at swimming pools or play centres could be very dangerous for her due to risk of infection.

Penny and her family have been visiting Little Harbour for two years and on their first visit mum Nicky and Dad Jon found it hard to handover the complex reigns of looking after their daughter to the Care Team at the hospice. As her primary carers they were not used to anyone else administering Penny’s medication or feeds through her gastrostomy and weren’t used to not being by her side at all times. For her first few visits Penny stayed in her parents accommodation upstairs overnight but now she sleeps downstairs in her own room allowing her parents to get a good night’s sleep knowing that the Care Team will be on hand looking after Penny through the night.

Mum Nicky says

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. They have a great time doing activities and going on trips out with the dedicated Sibling Team as well as playing with other siblings who have similar family situations.

Mum Nicky explains the benefits for the whole family of their breaks at 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 says

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.

Penny is a very social child and loves everything at Little Harbour especially the sensory room, soft play, visits from Dennis the PAT dog as well as music therapy where in her last session her laughing could be heard from the other end of the hospice.

Penny’s family are incredibly grateful to CHSW for the care and support they provide at Little Harbour during their stays as well as when they are back home.

Dad Jon says “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.”