Family Nursing and Home Care’s (FNHC) first Colour Festival takes place this Saturday 6 July, where funds raised will go towards FNHC’s Paediatric Palliative Care Worker who supports children and families on the Children’s Palliative Care Pathway.
Currently on the Children’s Palliative Care Pathway is four year-old, Kian Channing who has bilateral renal dysplasia, which is a condition where both kidneys do not develop properly while a baby is growing in the womb. Kian was also born with a heart defect. By the time he was 14 months old, he had already gone through heart surgery twice.
Kian’s current kidney function is deteriorating which will eventually require a transplant. As a result of his kidney failure, Kian suffers from regular vomiting, which in turn affects his appetite so he often doesn’t feel hungry. Therefore, to ensure he gets all the nutrients and treatment he needs, Kian is pump-fed milk and his medicines.
Kian’s condition has a huge impact on the whole family. They spend a lot of time apart due to being back and forth to the UK for treatment. Kian’s mum, Kirsty Channing, says life is much easier with FNHC’s support.
“Before Kian turned one, we had no support and it was very difficult. FNHC has been supporting us now for the last three years and it has made a huge difference to our family life. Having that reassurance of someone being there at the end of the phone who’s trained to help with Kian’s medical needs is such a relief and a comfort to us as a family. The level of emotional support provided to us as a family is just as important. I honestly don’t know what we would do without FNHC. We wouldn’t be able to live the life we lead right now without its help,” said Kirsty.
The role of the Paediatric Palliative Care Worker at FNHC has evolved in its first year to meet the needs of all families who require support, which is variable and uniquely dependent on their individual needs and circumstances.
FNHC’s new Paediatric Palliative Care Worker, Victoria Whittingham, said: “The paediatric care worker role provides essential respite for families with life limiting and life threatening illnesses. There is an increasing number of local children suffering from chronic and acute conditions that require long term or intensive care. The number of families on the Children’s Palliative Care Pathway has significantly grown since last year. In 2018, there were 22 families on the Pathway, which has now increased to 36 – emphasising the growing need for this role in the Island. Our aim is to enhance each family’s quality of life by offering emotional, practical and holistic support.”
Funds raised from the Colour Festival will go towards funding for the Paediatric Palliative Care Worker role which, as Kirsty understands first-hand, is vital to supporting many local families.
“It’s fantastic that islanders get behind events like the Colour Festival to raise money for FNHC and its paediatric care worker role, which provides invaluable support to my family and so many others in the Island. The Community Children’s Nursing team at FNHC have become an extension of our family and life wouldn’t be as positive as it is now without their help,” added Kirsty.
Islanders participating in the colour run at the Colour Festival will run or walk a 5km circular route along the beach at St Aubin, to Bel Royal and back, whilst being showered in five different coloured biodegradable paints. At the end of the run, there will be a celebratory ‘paint the sky’ effect created by one, big paint cloud over the participants before the tug of war race begins.
To sign up for the Colour Festival, please visit: https://race-nation.com/FNHCs-Colour-Festival