Haven House Children’s Hospice

“It’s like one big happy family”

Joanne Luxton, 46 from Essex, explains how Haven House Children’s Hospice has helped her family

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When Joanne Luxton’s son Harry, now 17, was six months old, she noticed that he didn’t seem to be hitting any of his developmental milestones. “He wasn’t able to sit up on his own or do many of the things our younger niece was doing with ease. However, people kept reassuring us that he was just a late bloomer and would soon catch up, so we tried our best not to worry.”

It was only as time went on and Harry hadn’t started to crawl or show signs of walking that alarm bells rang for Joanne, 46, and her husband Steve. “We took him to our GP several times until he was eventually referred to a paediatrician, who diagnosed him with learning difficulties. He started attending a special playschool, which seemed to bring him up to speed.”

When Harry was three, Joanne took him back to the paediatrician. “He said he would sign Harry off and that he didn’t need any extra tuition, but when he asked if we had any other concerns I said I did – that although Harry had learnt to walk at 18 months, he couldn’t walk or move as fast as other the children his age.”

Harry was sent for blood tests, which showed elevated levels of creatine kinase – an enzyme that leaks out of damaged muscle. He was then sent to Great Ormond Street Hospital for a muscle biopsy, which revealed he had Duchenne muscular dystrophy (DMD) – a severe muscle-wasting condition. “It was the worst day of my life. We were sat with our three-and-a-half-year-old son being told he had this incurable illness. They started to explain what this entailed for Harry and how the average life expectancy was just 19 years old. I felt physically sick.” Since his diagnosis, Harry’s range of movement has gradually decreased. “He came off his feet full time when he was 11 and is now in a wheelchair. He also has little movement in his neck and his arms are very weak, so he’s not able to do anything for himself.”

Harry takes medication for his heart to try to slow down the onset of cardiomyopathy – a disease of the heart muscle – and antibiotics to stop him from developing any severe chest infections. He also had an operation on his spine last September, as he had developed scoliosis.

Harry attends a mainstream school, although he struggles with some lessons. “He’s got a good memory but he can struggle to take things in. A lot of boys with muscular dystrophy struggle with maths, too, so he has extra help with that.”

One of the biggest challenges for Harry and his family is the difficulties they face in getting out and about. “A day out for us can never be low key – we always make an entrance because we have to look out for steps, or ask people to move their chairs so we can get Harry’s wheelchair though.

“It’s also frustrating for Harry that he can’t just hop on a bus like other boys his age, and his shyness means he struggles to ask for assistance.”

Around Easter 2015, Harry went into hospital with pneumonia. While there, a community nurse gave Joanne information on services that were available to the family, including Haven House Children’s Hospice. “I heard the word hospice and immediately thought it was a place for people at the end of their lives. However, she reassured me it wasn’t like that and invited us to look around.

“As soon as I walked in I was overwhelmed by how lovely it was. It was such a welcoming place. Everyone was so friendly and I couldn’t wait for Harry to come and see what he thought.”

Harry started to attend Haven House for the weekend once every couple of months. “He wasn’t sure about it at first as he doesn’t like change, but he quickly realised that he loves what goes on there. They’ve taken him to the cinema and to restaurants, but his favourite thing is art therapy with a lady called Rowline. He has always loved art and she  encourages him to try different things. He’s always learning and has produced some fantastic pieces of artwork. The hospice has also helped with his communication skills as he spends time there without us, and so he has to tell the staff there what he needs.”

Harry’s visits to Haven House have also given the rest of the family time to do things they couldn’t normally do. “We have two daughters – Ellie, 15, and Ruby, seven – so we get to do things with them that would be difficult for Harry, like swimming or ice skating, or just going for a wander through the forest with the dog.

“Finding Haven House has been wonderful for us all. Everybody is so kind and supportive, not just to the children who attend but to the parents and siblings as well. It seems like one big happy family and is just a fantastic place to be.”

TOTAL RAISED: £35,717

THE FACTS – Haven House Children’s Hospice

  • Since 2003, Haven House Children’s Hospice has supported over 650 families, looking after young people aged from birth to 19 years old who have life-threatening conditions.
  • It wants to grow its services to support 500 children per year across north and north-east London, west Essex and east Hertfordshire by 2020.
  • A significant proportion of the care the hospice provides is respite; it is not predominantly about death and dying.
  • Haven House receives limited funding from the Government and relies almost entirely on donations.
  • Visit havenhouse.org.uk for more.

BIG GIVE UPDATE

Haven House will use the money raised to employ another nurse to provide expert medical care. Haven House enables children to have time to socialise with other children while families can have a break from 24/7 caring responsibilities, which is essential for health and well-being.

 

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