WATCH: "We wouldn’t be able to live the life we lead now without help"

Saturday 06 July 2019

The mother of four-year-old boy with life-limiting heart and kidney problems has shared his story ahead of a kaleidoscopic fundraiser aiming to raise money for a special children's palliative care worker.

Kian Channing (4) is one of a growing number of children who stands to benefit from today's colour run, which will is expected to see 1,500 islanders douse themselves in colour, with funds going towards supporting youngsters and families on Family and Nursing Home Care's (FNHC) Children’s Palliative Care Pathway.

The number of children on the Pathway has gone from 22 to 36 in the last year, Victoria Whittingham, FNHC’s new Paediatric Palliative Care Worker, explained. 

"There is an increasing number of local children suffering from chronic and acute conditions that require long term or intensive care," she said. "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"

Video: Kian and his family are one of the many supported by Victoria Whittingham, FNHC’s Paediatric Palliative Care Worker.

Kian Channing (4) is currently on the Pathway. The little boy has bilateral renal dysplasia, a condition where both kidneys do not develop properly in the womb, and was born with a heart defect. By the time he was 14 months old, Kyan had already gone through heart surgery twice.

HIs kidney function is currently deteriorating which will eventually require a transplant. As a result of his kidney failure, Kian throws up regularly, which affects his appetite so he often doesn’t feel hungry. To ensure he gets all the nutrients and treatment he needs, Kian is given milk and his medicines through a feeding tube.

His condition has a huge impact on the whole family as 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.  

Pictured: Nicola Waggott, the FNHC former Paediatric Palliative Care Worker and Kian Channing.

“Before Kian turned one, we had no support and it was very difficult," she said. "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."

Pictured: Runners will be doused in coloured powder throughout the course.

Created last year to help cover some of the work done by the lead nurse, who had to provide clinical care and help with tasks more fitted for a support worker, the role of the Paediatric Palliative Care Worker at FNHC, has since evolved to meet the needs of all families who require variable support, depending on their individual needs and circumstances.  

To fund the service, FNHC is hosting a Colour Festival today with a 5km colour run (or walk) starting from the Esplanade at 14:00. The event will also include activities throughout the day: a sand castle family workshop with Jersey’s Sandman, live music from local talent and a DJ, a tug-of-war race and finally the Colour Run.

Video: Over 1,500 islanders are expected to get colourful today.

Over 1,500 runners are expected to get doused in different coloured and biodegradable powdered paint. 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.

Last year saw 971 islanders took part in the colourful fundraiser, raising over £17,000 for FNHC in the process.

“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," Kirsty added. "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." 

Pictured: Nicola Waggott, the FNHC former Paediatric Palliative Care Worker and Kian Channing.