Testimonies

I contacted HUSH in 2002 when I realised that my daughter had a life-threatening disease, and I had no-one turn to. Suddenly there was a life-line. I was in contact with people who had been through the same harrowing experiences, who understood my desolation - who knew the pain of seeing a loved one change overnight from having a normal happy life to having no real future. Ishbel Mackinnon talked me through the highs and lows and made me feel I was not alone.

HUSH is a charity in the true sense of the word. I was one of the lucky ones - my daughter recovered. But I know one thing for sure, I couldn't have survived without HUSH.

Let me tell you more about what happened:-

When you start a new job you always want to get off on the right foot being ill just isnt an option.

So when our 25-year-old daughter Amy got an upset stomach just a week after starting work as a teaching assistant, she was determined to carry on going in every day. At first she even thought her illness might be down to the stress of her new job. But later on, as she carried on vomiting violently, she realised it was something else. She ruled out food poisoning as shed been a vegetarian for 10 years and had always washed her fruit and veg scrupulously.

Just before I got ill, Id only eaten salad and pasta so I couldnt understand why my stomach was so queasy,

says Amy. But three days later I was sent home from work because I was so ill. I didnt have the energy to look after myself so I went to stay with Mum and Dad.

I was so worried because Amy was doubled up in pain. She called the emergency doctor who assured them it was gastroenteritis. But over the next two days the symptoms got worse. She was constantly vomiting and could barely walk. She was begging for help and we all felt something terrible was happening.

We took Amy to the emergency health centre three more times but the doctors didnt seem worried. But, as parents, we werent convinced she'd never been that ill before. Eight days after the illness began, a fourth emergency doctor admitted Amy to hospital for tests.

Again we were assured it was severe gastroenteritis but an hour later tests revealed that Amy's kidneys had failed completely. Suddenly everyone started panicking. Shewas rushed away for X-rays then taken straight to a ward. It was only then that the doctors suspected E.coli food poisoning - commonly caused by eating contaminated beef. We couldnt understand that as Amy hadnt eaten meat for years. What we didnt know was that unwashed salads and vegetables can also be a source of contamination. Amys condition was critical and the next day she was transferred to a renal unit at nearby Royal Preston Hospital and thats the last thing she remembers.

We were with her when her eyes rolled to the ceiling and she lost consciousness. We were heartbroken but angry because no one had believed how ill she was until this late stage. Further tests revealed Amy definitely had E.coli O157 but worse was to come. She had also developed Haemolytic Uraemic Syndrome (HUS), a little-known but deadly complication which causes toxins in the bloodstream to attack the heart, lungs and kidneys.

The next time I saw my daughter she was on a life support machine in intensive care. The risk of infection was so serious, she was isolated from the rest of the patients I couldnt stop crying when I saw her lying there. We had to disinfect our hands before touching her and all I wanted to do was give her a great big hug.

Doctors told us it was difficult to assess the damage caused by HUS and that Amy only had a one in four chance of survival. The shock was unbelievable. Forty-eight hours before, Amy was a petite size eight now her face and body were swollen with fluid from her failed kidneys and she was barely recognisable. Not only did she have acute kidney failure, her lungs were deteriorating fast, there was fluid around her heart and, most frightening of all, the toxins had reached her brain which caused epileptic fits.

The doctors didnt hold out much hope and we were told that even if she survived, there was every chance shed be brain damaged and her kidneys wouldnt work again.

I was paralysed with fear at the possibility of losing Amy but even the thought of such terrible damage didnt stop me praying for her to survive.

Amy had been in intensive care for three days before we went home to Poulton-le-Fylde, near Blackpool, to get some desperately needed sleep.

At 4.30 am the next morning the hospital phoned Amy had a fatal lung infection. Fluid had overflown from her lungs and was spilling out her mouth. I remember we didnt speak for the entire journey to the hospital. All I could think of was how I would cope at the funeral.

The next few days were critical, but Amy proved herself to be a fighter and somehow she just clung on to life.

Gradually her condition stabilized but she was still unconscious. And then, against all odds, her lungs started functioning again and she was out of immediate danger. We spent the next two weeks at her bedside, reading her stories, telling her jokes and showing her photos. Gradually, with regular blood transfusions and kidney dialysis, Amys condition began to improve.

Almost six weeks after Amy was rushed into intensive care, doctors stopped the heavy sedation (theyd needed to paralyse her body so they could replace her blood) and now they could only wait and see. It was an agonising time but, seven days on, she woke up. I arrived at intensive care and began the walk to Amys bed when I saw a group of nurses smiling broadly theyd lined up along the corridor waiting to see my reaction. As I turned the corner, I saw Amy propped up in bed her eyes were open and she was smiling at me as if shed woken up from a long sleep. It was the most incredible moment of my entire life.

Amys specialist admitted she had recovered against all expectations. Two months later, Amy was allowed home. She has almost made a full recovery, though she remembers little about her time in hospital. Amy initially needed crutches as her legs were weak due to muscle wastage while unconscious but her kidneys were working, her lungs were fine and there was no signs of brain damage.

Medically her recovery is a mystery, but doctors believe that the will to live can be as valuable as any treatment. No-one knows for sure how Amy contracted E.coli. I wash all the fresh fruit and vegetables I buy even prepacked ones, Amy says. Who would have thought you could die from eating lettuce?

(Adapted from an article Marilyn wrote for Woman magazine in 2003)

Footnote 2010

Amy is now fully recovered. She loves travelling, works full time as a teaching assistant and is engaged to be married to Mark Walmsley, whom she met after recovering from E.coli.

Marilyn agreed to become one of HUSH's directors in 2010.