FOR the families of seriously ill children every Christmas is special - which is why parents call the Pepper Foundation’s work a “Godsend”.
On call 24 hours a day, 365 days a year, Pepper Nurses have been ready and waiting to respond to a plea for help from parents of terminally ill children this Christmas.
The calls can range from parents wanting to ask simple care advice over the phone or to request a nurse to look after their child so mum and dad can go food shopping or take a short break from caring for their child.
Nurses are also on hand to support families if the worst should happen.
Sarah Mobsby, 37, has been a Pepper Nurse for more than four years.
She said: “It can be very busy over the Christmas period and the calls can be varied. Parents call and we aim to get to them as soon as possible.
“But, sadly, it’s often the more serious side of things at Christmas because parents usually want their children to be at home with the family rather than in a hospital where possible.
“So we go in to homes to do symptom management, end of life care, if a family are struggling to cope we pop round to give rest-bite so they can do their shopping or go out to see friends, the things we take for granted.
“We are professional nurses but you cannot help but be affected by it, as we get to know the child and the families. We may be with them for years or just a few days, but you form strong relationships with them.”
The six Pepper Nurses are funded by the Pepper Foundation charity and managed by Iain Rennie Hospice Care organisation. They cover part of Buckinghamshire and Hertfordshire.
Two-year-old Amber Jutla from Downley has Infantile Batten Disease, an inherited nervous system disorder which usually results in death by the time the child reaches the age of five.
Mum Caroline praised the work of the nurses who have helped to support not only her and husband Rob, but also their son Jamie.
Mrs Jutla said: “Pepper is a Godsend; they cut down our hospital time and help to bring a bit of normality to our lives.
“It becomes very hard to allow someone into your home but they just come in and I know I can trust them and that Amber will be safe.
“If anything happens over Christmas I can just pick up the phone and someone will come out day or night, 365 days a year.
“They also come on regular visits, so I can do things like food shopping and emotionally they are brilliant – they’ve become our friends.
“People also don’t realise the effect it has on the sibling of a terminally ill child – they’ve been fantastic with Jamie, doing a sibling group so he can meet other children going through the same thing.”
Rob and Caroline raised £2,700 for Pepper by doing a skydive and Caroline now runs part of Pepper’s social media work – which, they say, is the least they can do to a charity which gives so much to them.
She said: “They’ve made such a difference to our lives, having them around us for support and also helping Amber, I just wanted to give something back – so any help I can give back to them I do.”
Pepper chairman Jonathan Tweed added: "The commitment of the Pepper nurses is that they provide support to families in need, when its needed, whatever time of day or day of the year - including Christmas.
"The reassurance this gives to families looking after a fragile, life-limited child, enables them to spend holiday time together, happy in the knowledge that help will be on hand if needed."
For more information about the Pepper Foundation visit www.irhh.org/Pepper