A Word

Feature: Helen House
A home from home by Jacqueline Alexander

Helen House is a children's hospice offering much-needed support to families in Berkshire, Oxfordshire and Buckinghamshire. Jacqueline Alexander went along to find out more.

In a world where we are constantly bombarded with information on how to look younger and live longer, the opening words of Sister Frances, founder of Helen and Douglas House, infiltrate every nook and cranny of my mind.

"It is not about the length of your life, but the depth."

This is the message of Helen House and I can't help thinking they're on to something - it wouldn't be a bad idea if it became the message by which we all lived.

Helen and Douglas House

Before arriving at Helen House, I only had a vague idea of what to expect. I feared death would waft through the air, permeating every corner of the building and every fibre of my being, but I couldn't have been more wrong. This hospice invites its guests to enjoy a quality of life available to very few. The children, all living with life-shortening conditions, enjoy a bright, lively, warm environment and the invitation relax for a while is extended to the whole family.

Harry Pickering, featured in the Helen House video, is a beautiful, blond, angelic-looking young boy with a mischievous twinkle in his eye that every child should have. As I watch, I find myself wanting to meet him. It is a shock when the narrator tells me he suffers from Spinal Muscular Atrophy. I have no idea what that is, and watching the images of Harry, I am no wiser. He looks just like any other happy child. My emotions jar as I discover that Harry died, aged just six years old, at Helen House.

Harry's mum, Lizzie, now a valuable member of the Helen House team, tells how she and her family strived to live a normal life together.

"It was difficult," Lizzie explains. "We wanted Harry's life, and our lives, to be as normal as possible but it wasn't always easy. Harry needed to be turned every hour during the night so sleep deprivation was a constant problem. Finding Helen House changed our lives and gave incredible support, comfort and relief to our family. We handed over Harry's condition and kept Harry."

Opened in 1982, Helen House is the brain-child of Sister Frances Dominica. After becoming friends with the parents of little girl who was seriously ill, Sister Frances offered to help and, on occasion, acted as child-minder to give the parents a break. The little girl's name was Helen.

Seeing the need to provide both medical care and emotional support for families with children with a life shortening illness, the idea of a children's hospice was born.

Since then, thousands of families have benefited from the very special level of care available to them at Helen House, the first of over 40 children's hospice services in the UK. It is a place where the emphasis is not on the illness but on the child and the family.

Walking around the premises, it is easy to forget the term 'hospice'. In the art room, I am very tempted to open up a few of the boxes and put together a montage, make a model or splash some paint around. It looks fun and I want to join in. A peek into the sensory room, and I am having to exercise severe levels of self-discipline not to jump in.

The music room and the games room have a similar effect. This place is about life - a good life.

Over a period of 4 and 1/2 years, Harry and his family spent many happy hours at Helen House but when it came to the final hours of his short life, Lizzie tells how she discovered a whole new level of support.

"I really thought that we had benefited from the best that Helen House had to offer," Lizzie reveals. "When Harry took a turn for the worse and we knew we were going to lose him, everyone went into a different gear. They upped the ante to astonishing levels and gave us the support, the care and the sensitivity needed at that time. Everyone instinctively knew what we wanted and gave it unconditionally."

Charity, in the case of Helen House, doesn't just begin at home - it provides one. It is a home-from-home where families are allowed to free themselves of the burden of illness and get on with enjoying their lives. And it doesn't cost them a penny.

My visit gave me a valuable insight into just how a charity can make a difference to the lives of people touched by life-shortening conditions. I don't think the difference can be measured but I do know that every family welcomed into Helen House is a lucky family.

Helen House costs over 1.5million per year to run. It receives less that 5% of the required income from statutory funding so it's existence relies on charitable donations. This year, Jacqueline Alexander, as part of Team Redgrave, is running the London Marathon to raise money for three children's charities including the Association of Children's Hospices. To show your support, please visit www.justgiving.com/jacquelinealexander. Thank you.



by Jacqueline Alexander
Copyright 2012

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