IT is hard to imagine the trauma faced by families when a child is diagnosed with a life-limiting condition.

For parents, it is the worst nightmare – to see a beloved child suffer and to understand all the natural and expected promise of a life to come will be cut short.

The controversy surrounding the death of Alfie Evans in April – a story which tugged heartstrings around the world and created a social media storm – just goes to show how deeply people care.

A charity providing specialist care to children with such conditions, and to their families, has now set up in Swindon. Jessie May, Children’s Hospice at Home, has its headquarters in Bristol but has recently established an office in Newbridge Square, in Swindon.

They are supporting 35 families in Swindon and Wiltshire, and giving continuing bereavement support to a further three families. Jessie May provides a free service for children and young people, as well as supporting the whole family to help maintain the best possible quality of life.

Now Swindon and Wiltshire fundraiser Debbie Clark says they are keen to tell local people about the work they do, and to win more help and support for the charity.

“We offer a hospice at home service, similar to Julia’s House except that we do it all in the home,” she explained. “Our nurses become a valuable part of an extended family. Every family has a specific nurse, and they build up a real rapport with them.

“All of our children are life limited – some very severely. From the family’s point of view, we are trusted. The nurses know all the child’s history and gains the family’s confidence.”

Four Jessie May nurses will be working from the Swindon base. Three are in post, and a fourth is being recruited. The nurses can administer prescribed medication and procedures, spend time playing or reading with a child even cuddle them and help them to sleep – just as the child and family wishes.

The nurses also support parents by giving help and advice and offering short periods of respite care in the home, to gave hard-pressed parents a little time to take a break.

“Each respite visit, the family can get up to four hours of care,” Debbie said. “Our nurses can take children out, for swimming or ice skating, or to Roves Farm.

“Sometimes it might be the first time a child has had a swim. It’s memory making.”

If a child has particular medical needs, such as a tracheotomy, or a hearing aid, it can be hard for parents to manage something like a visit to a swimming pool. It might also be difficult for a parent on their own to cope – which is where a Jessie May nurse might be able to help.

“We are good at finding ways around these situations and have lots of different ways to facilitate activities,” Debbie said.

She explained that when they have a seriously ill child, parents may have to give up work, and the chance of a short break in caring might be vital.

Jessie May nurses can give advice and time to listen – with someone on the end of a phone at any time during office hours. The charity offers family fun days in the summer, and an annual Christmas party, alongside family group meetings where parents can meet others who understand what they are going through.

“We offer emotional support but can also point parents to the right benefits, to support what they need for specialist care, or if the house needs adapting,” Debbie said. “As children grow, they may be very heavy and we can help find ways to cope with that. It can be a quagmire of paperwork. We know where to go and what to say, to cut through the red tape – it can help take the emotional pressure away.”

The charity even offers bereavement support – from the practicalities of organising a funeral to providing emotional support when dealing with loss and grief, even years after the death of a child.

Mary Hunt, from Calne, is the Jessie May nurse team leader in Swindon: she worked in the children’s ward at the Great Western Hospital before taking up this new post.

“All of our nurses are trained children’s nurses,” she said. “You get to make relationships with families and I love that – it’s a completely different kettle of fish.

“We can’t change the outcome, but if we can make a difference, if we can make it smoother or better, or easier, that makes all the difference. If we can help in any way with the journey, that’s worthwhile in itself.”

Referrals are made by health practitioners or by parents, if their child is not likely to live beyond the age of 19. The relationship begins with a form to be filled and then a visit, to discuss the family’s needs. Jessie May nurses help take care of children with genetic conditions, unknown metabolic conditions and occasionally with childhood cancers. The children range in age from newly born to 19.

The organisation was first set up in 1994 by Chris and Philippa Purrington following the death of their daughter Jessie May at four and a half months of age. She had a rare genetic condition know as Spinal Muscular Atrophy.

When visiting relatives in Bristol, Jessica was admitted to the local hospital, where the family realised the support they received at home in High Wycombe was not available to people caring for their child at home in the Bristol area.

Jessica was cared for by her family at home throughout her illness. She died peacefully at home in her father's arms, in privacy and with dignity, surrounded by those who loved her.

Jessica’s parents were determined to do what they could to enable other children with conditions like Jessica’s, and their families, to have support in their own homes and the choice to die at home when that time comes.

After a lot of hard work and perseverance, initial funding was secured, and Jessie May was officially launched in 1996.

This year the charity is looking to raise £1.3 million, through grants from foundations and trusts, as well as all kinds of fund-raising activities – and they are keen to raise as much as possible, so they can help more families.

Find out more about the charity and help them raise funds at a Family Fun Day in Swindon on Saturday August 4 from 10am to 4pm, at the Swindon Rugby Club on Greenbridge Road. Expect a fun fair and face painting, as well as a dog show, sand art painting and a host of other games and entertainments.

For more information and to make a donation, visit jessiemay.org.uk.