Online Time Bomb

'The timebomb in my family'

AMY WILLIAMS, a 30-yearold mother-of-two from Rickmansworth, Herts, is living with a terrible inheritance. She has a genetic heart condition that could see her drop dead without warning - just as her mother, grandfather and great-grandmother have already done. Six of her close relatives share her condition, including her seven-year-old son Andre. Here, Amy, who lives with her husband Ormsby, 36, a marketing manager, and their children, Andre and Hayley, three, tells us of life in the shadow of death.

THIS Saturday, as usual, I will be shivering on the touchline of the school playing field with all the other mothers while our sons play football.

They all shout and cheer on their boys, egging them on. But not me: I'm too busy praying - though not for a golden goal.

I am praying that my son does not collapse and die on the pitch.

Like me, Andre has Hypertrophic Cardiomyopathy (HCM) - a condition caused by an enlarged heart muscle that pumps blood inefficiently. HCM interferes with the electrical signals that regulate the heartbeat and can cause the heart to stop without warning.

Both of us know that, unless we are careful, we could die at any time. But I also have to live with the dreadful knowledge that my son is ill because of me.

For HCM is a hereditary condition, passed down by both men and women. If one parent carries the gene, there is a 50:50 chance of inheriting the illness.

It has already had a dramatic effect on my family. Most recently, it was my mother, Carolyn Biro, who lost her life to it last year.

For the early years of her life, Mum didn't realise she was ill. Then, as she hit her late 20s, she kept getting breathless. At first it was mild, but as the years wore on it got worse.

In 1978, when Mum was 30, she was told she had HCM - a condition affecting one in 500 people.

The doctors also looked at my mother's family history. The sudden, unexplained deaths of her father, Ivan, and grandmother, Dorothy, were no longer a mystery. They had suffered from HCM, too.

The news hit our family like a bombshell. My mother was being told, at 30, that she had five years to live. Over the next few years, everyone in Mum's immediate family was tested, using an electro- cardiogram (ECG) and an ultrasound scan, which shows up abnormal heartbeat patterns.

One by one, we saw the specialists at Hammersmith Hospital. And, one by one, we were told whether we had HCM and an early death sentence - or whether we had been spared from the family curse.

It was horrible - a game of Russian roulette with genes instead of bullets. Unless the day comes when doctors find a way -

Died of HCM at 54


Genetic roulette: Amy's family tree shows the devastating impact HCM can have

Died of HCM at 55

Has HCM Died of HCM at 54

and it is considered ethically all right - to control which genes we pass on to our children, pregnancy means taking a 50 per cent risk that HCM will be inherited.

Once you know you have the condition, the only thing you can do is be careful. You have to be monitored regularly, take medication and not over-exert yourself.

I was five when I was diagnosed, but I didn't have any symptoms until I was 16. I was lucky to be diagnosed so young, but as I grew up I still took risks. I loved aerobics classes and discos. I just wanted to be 'normal'.

The turning point for me came halfway through a step aerobics class, when I blacked out. I must have overdone it. I came round desperately hoping someone there knew CPR (cardio-pulmonary resuscitation), in case my heart packed up. I was terrified. After that, I stopped all vigorous exercise.

But HCM hasn't stopped me from fulfilling my ambition of becoming a teacher. Nor did it stop me from finding a husband.

I met Ormsby through friends in 1994, and we hit it off straight away. We were already engaged when I discovered I was pregnant.

By then, I had become so used to my HCM that I hadn't considered the implications of starting my own family. I suppose I thought I would be one of the lucky ones who didn't pass it on.

In 1995, I gave birth to Andre. He looked so healthy and handsome.

As I held my beautiful baby for the first time, I tried not to think about what the future might hold.

Four months later - the earliest it could be done - he was tested for HCM. Mum came with me to get the results. When we were told that Andre had HCM, we burst into tears.

Ormsby was very supportive, never casting any blame, and in 1996 we married. Given the risk, I thought I couldn't bear to become pregnant again, but four years ago, though it wasn't planned, I did.

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