A Family's Story

Read one family’s moving story and tribute to Hope House, featured in Woman magazine
(please click on the image below to read)

Thank you for making Chris’s last years so happy

Dear David,

I don’t know how my husband Mike and I would have got through the past few years without you. When we first took our son Chris to Hope House Children’s Hospice he was very ill. We were worried he’d feel isolated or scared, but you took away our fears the minute you introduced yourself. ‘I’m David,’ you smiled at Chris, ‘and I’ll be here for anything you need, mate.’ We knew instantly you were someone we could trust.

Over the next four years you gained a special place in our hearts. And we will always be grateful…

Mike and I had been married for four years when I found out I was pregnant with Chris. We were thrilled when our baby was born.

For the first few years Chris was like any other little boy. He loved toy cars and taking things apart. But one day, when he was four, one of the teachers at his school noticed he was walking on his tiptoes. He was referred to a doctor for blood tests. ‘It’s bad news,’ the doctor told us. ‘Chris has a genetic condition called Duchenne Muscular Dystrophy.’

‘What’s that,’ I gasped holding Mike’s hand tightly.

‘It’s a muscle-wasting condition she replied. ‘It often starts in the legs and then affects the arms and trunk. He’ll probably be in a wheelchair by his teens.’

‘Is there a cure,’ I asked as tears filled my eyes.

‘I’m afraid not,’ the doctor said. ‘The condition will affect his heart as well so it’s unlikely he’ll live past his 20s. I’m very sorry.’

That night Mike and I held each other and cried. It was hard to imagine that in only a few years’ our lively little boy wouldn’t be able to walk, let alone run.

Over the next few years we watched Chris’s body slowly deteriorate. By the time he was five he couldn’t get up the stairs and, as his leg muscles became tighter, he found it harder and harder to walk.

I was so proud of Chris being so brave. He rarely talked about his condition he just got on with life. By the time he was eight, Chris was confined to a wheelchair. He was also given a back brace because his spine was starting to bend. He found it uncomfortable and it was torture watching our son go through so much at such a young age.

At 11, he was referred to a school for children with special needs called Dorin Park, not far from our home in Chester, Cheshire. He was really happy there and he didn’t feel different from the other children.

Mike and I would often have to get up in the night to turn Chris. It was difficult for Mike to do his job as an IT planner when he was tired, and when Chris wasn’t at school I’d take care of him at home, which could be exhausting.

We’d been put in touch with a social worker called Yvonne. She was the one who first told us about Hope House – a children’s hospice near Oswestry, Shropshire. ‘They have experienced staff there who can help look after Chris,’ she said. But when I heard the word ‘hospice’ I was reluctant. ‘Go on take a look,’ Yvonne said. ‘It’s not what you’d expect.’ She was right. When we arrived at the large sunlit building set among rolling hills we were taken aback. Inside, the rooms were colourful and full of toys and games. Chris liked it.

‘I’ll be fine here, Mum,’ he said, racing over to the computer. It was a few weeks later that we were introduced to you, David. You were assigned as Chris’s nurse but ended up being so much more. You both enjoyed computer games and had the same cheeky sense of humour. ‘When can I go and see David next?’ Chris would constantly ask.

All the staff at the Hope House work hard to provide care for the children there – many of whom are terminally ill. But you went the extra mile, visiting Chris at home on his birthday and ringing for a chat when he couldn’t make it to the hospice. David, you made us realised that hospices could be sunny, fun and above all happy places.

Chris stayed for weekends once every three months and usually visited every three days in between. He loved it there, ‘He’s a really special kid,’ you’d tell us proudly.

Then, when Chris was 15, four years after he first visited Hope House, he began suffering stomach pains and was very uncomfortable. It was awful because his muscular dystrophy was advanced and he couldn’t even lift his arms. All he could do was tell us how uncomfortable he felt. We called the doctor, who said it was probably a water infection and prescribed antibiotics, but they didn’t help.

A few days later Chris was due to go to Hope House and was determined he was going to go and see you and his other friends. But the night we arrived, on 25th August 2000, he was very restless and uncomfortable and the next day the hospice doctor said we should take him to hospital to get him checked out. ‘I’ll drive him’ Mike said ‘The ambulance will take too long.’ You offered to sit in the back with Chris. The next few minutes were the worst of my life. You were telling Chris a naughty joke and I heard him giggle. Then you told another but he didn’t laugh. ‘Didn’t you find that one funny, then?’ you asked him, but he didn’t reply. ‘Chris? Chris? Are you all right?’ you said urgently. ‘Chris, talk to me…’ Then you cried, ‘something’s wrong, pull over!’ As Mike stopped the car in a lay-by. Chris’s head was tilted back and his eyes had rolled into the back of his head.

I watched helplessly as you and Mike tried to resuscitate him. But deep down I knew it was too late – our son’s heart had grown too weak and simply stopped beating. He was rushed to hospital by ambulance, but he was declared dead on arrival. You shared our tears as the doctor told us he hadn’t been in pain as he passed away. ‘I’ll never forget him,’ you promised.

The following months were hell, but you helped us through it. ‘Call me whenever you need to talk,’ you’d say. Just knowing you were there meant so much.

It’s been five years since Chris’s death and we think about him everyday. We still like to visit the hospice and bring gifts or donations or help out. Seeing you makes us feel closer to our son. We love hearing stories about Chris – the things he did when we weren’t around, such as the way he’d help the children who couldn’t talk – he had a special way of connecting with people like that.

Mike’s written a book called Walk of Life and you have a special mention. It’s our way of saying a big thank you, to you and all the other Hope House staff who made Chris’s life so happy.

Love,

Annette and Mike

Walk of Life by Mike Barratt costs £10 and can be purchased at www.members.aol.com/walkcontact. Proceeds will go to Hope House.