Eleven-year-old Haider Iqbal has had more than 20 operations in his short life.

The youngster from Headington, Oxford, has been coming to Helen House since he was just eight months old after being diagnosed with the complex condition Raine Syndrome.

His family is just one of hundreds who have been embraced by the warm and welcoming atmosphere at the hospice.

His mother Asma Iqbal, 39, said: “The word hospice was very new to me and when his consultant referred us, I thought it would be too much stress for all of us.

“But when they showed us round there was a warm welcome and emotional support and I found it really helpful, especially when I didn’t have anyone to talk to.

“The staff were so lovely and a lot of them are a bit older than me so when I talked to them I felt like I was talking to my mum.”

Caring for Haider is a full-time job, as his condition requires him to be fed through a tube directly into his stomach, given regular medication and he wears nappies.

With two other children, Sikander, six, and Nayaab, 15, Mrs Iqbal said respite care was a huge relief for her.

She said: “When I leave Haider here, I really miss him but I feel like he’s in safe hands and in a safe environment – and he’s having fun.

“At home sometimes I feel like I’m a nurse, and my mind is like a computer, trying to order all the different things I have to do.

“It means I can try to ease off my stress a little bit.”

As well as giving families time off, breaks at Helen House give children the chance to do things they can’t do at home.

On a typical visit to the hospice, Haider, a pupil at Mabel Prichard School, Littlemore, would have physiotherapy in the spa, aromatherapy massages, craft activities, along with visits to nearby places such as Cowley Road.

Haider said: “I like coming here.

“I like the trips and I like going on the bus.

“I have made friends here.”

Nursery nurse Jackie Ardley said: “They don’t have full structured days – it’s very much doing what he would like to do.”

Brandon Robinson, 12, from Buckingham, usually stays at Helen House with his grandparents and carers, Pete and Doreen Robinson – but with their own flat attached to the hospice for the duration of the stay, they still get a break.

Brandon, who has Duchenne Muscular Dystrophy, said: “I like going for walks down the Cowley Road and going to the games room and in the spa, but the best thing is the freedom.”

Staff try to book in groups of boys who are in wheelchairs of a similar age at the same time, so they can enjoy each other’s company.

Mrs Robinson, 49, said: “It’s completely different to what you expect, it‘s happy, it’s jolly and everybody’s so caring. It means we get a break overnight and we don’t have to worry.”

Oxfordshire Hospital Schools teacher Karin Hyatt spends three days a week at the hospice, helping the children keep up with their lessons.

She said: “We do fun teaching.

“A lot of the children say they don’t like coming to school, but they do like coming here.

“I love it here. Although sometimes very sad things happen, it’s the most positive, happy, vibrant place to work.”

At Douglas House, more independence is offered to some of the young adults who stay there – with a bar and nights out.

Nick Wallace, 27, from Northampton, used to visit Helen House as a teenager and has been coming to Douglas House since it opened and He said: “It is a mix of feelings when I come here because I do like it at home too.

“Places like this are really needed and I think my family would struggle without it.”

fbardsley@oxfordmail.co.uk l We will be running features on the county’s hospices for the next week. See Monday’s Mail to find out more about the volunteers who keep Helen & Douglas House running.

Helen House was the world’s first children’s hospice when it opened in 1982, and when Douglas House, aimed at young adults aged 16 to 35, first opened its doors in 2004 it was the only facility of its kind.

The hospices cost more than £4.5m each year to run, and provide respite and emergency care for more than 300 families.

Staff also provide support for more than 60 bereaved families.

Helen House has eight beds in total, two of which are emergency beds, and four family flats so the whole family can stay at the same time.

Douglas House has seven beds, including one emergency bed, and three family suites.