The 5-km fun run, which is open for entries until Monday 11 June and sees runners showered with multi-coloured paint as they take part, is due to take place on 16 June. Its host, Family Nursing & Home Care, said it would use the money raised to develop the role of the service’s palliative care worker, Nicola Waggott.
Ms Waggott has been in place four months and said prior to her appointment there was little support for the families of children facing terminal or chronic life-limiting illnesses.
‘I’m there to provide emotional and holistic support for the whole family,’ she said. ‘I think there is a general public consensus that “palliative” means end of life, and in a small number of cases it does, but in all cases there is lots of living and fun.’
One family that has already benefited is that of five-year-old Nixon Hansford. His mother, Dee Hansford, said Nixon might not be able to live at home without the support of the palliative care pathway.
He has a rare muscle myopathy condition, the exact nature of which is still being investigated by specialists.
It affects his mobility, his breathing and his eating, and he must be periodically transferred to Southampton for treatment.
To support his needs, the family has completely changed the way they live. His mother gave up work to care for him at home and the family, who appealed for help in the JEP with finding a new home, moved house to better support his needs.
‘When Nixon was first born, we weren’t sure what the outcome would be for him,’ Ms Hansford said. ‘Emotionally, it was very hard being apart, as we’re such a close family. When we got Nixon home, FNHC’s Community Children’s Nursing Team helped us adjust and settle in to life and supported us throughout the whole process. Having that reassurance of someone being at the end of the phone who’s trained to help with Nixon’s medical needs is such a relief and a comfort to us as a family.’
Nixon needs help to breathe at night. He also has difficulty eating and has to be pump-fed milk and medicines. He uses a walking frame to move about, unless he is very tired and must use his wheelchair.
‘If we didn’t have FNHC, I believe Nixon wouldn’t be at home,’ his mother said. ‘I can’t imagine his wellbeing and our family’s quality of life being as positive and great as it is now without the support of FNHC.’
The event costs £25 for adults to enter and £20 for under-16s. Last year it sold out, with 1,000 runners participating. Numbers for 2018 are capped at 1,300.
To enter visit race-nation.com/the-dandara-colour-run-2018.
