Fighting for heart awareness

When Vicky Johnson collapsed and died on August 31 last year, aged 20, her family were thrust onto a roller-coaster ride of emotions.

An inquest in December ruled the young fit and healthy mum died from sudden death syndrome – a condition which claims the fives of up to eight people a week.  The syndrome means the heart stops beating, stopping the vital flow of blood to the brain.

Vicky left behind five-month-old-baby Shannon.  When the Johnson family found out the condition could be hereditary they were faced with the biggest struggle of their lives.

Local primary healthcare trust chiefs refused to foot the bill for treatment at the nationally renowned London Heart Hospital so that Shannon and six other members of Vicky’s family could find out whether they were carrying the condition.

In March this year, a u-turn by health chiefs meant the trust backed down and referred Vicky’s mum, Jackie Johnson, her husband David, daughters Emma, 23, Donna, 19, Abbie, 16, and grand-daughters Shannon and Caitlin to Prof Bill McKenna, the country’s leading expert.

Jackie, of Canning Avenue, Alverthorpe, has now turned her hand to fighting to raise awareness of the condition through Cardiac Risk in the Young (CRY).

MPs David Hinchliffe and Bill O’Brien have vowed to help to have the condition brought to eye in a bid to help cut deaths condition.

Jackie Johnson said: “What we were so upset about when Vicky died was that we had to fight for screening.  I was going through a stressful and emotional time.

“Screening should have been automatic.  So many people sweep the condition under the carpet.

“I didn’t understand the condition myself – how was I going to explain it to other people?  If someone dies of a heart attack instantly people know what you are talking about.  When I told people Vicky died of sudden death syndrome the reaction every time was, ‘what’s that?’”

After Vicky’s inquest, Jackie began researching the condition.  She said: “The inquest results came at Christmas last year – I found it very emotional.  It was hard to take in.  I was trying to do my best for Shannon for Christmas and for the others to make it as happy as possible.  A friend suggested I look on the internet to understand it.

"My mind was whirring trying to take in all the information when I came to a part of the site which said it was hereditary.  It said there was a 50-50 chance that the condition is passed down the family line.  I read it and I was shaking and crying, I felt physically sick because the thought of it happening to Shannon was breaking my heart – I could not have coped with another loss.

“You feel very isolated – because there is so little about the condition.

“If we knew Vicky had this condition her death could have been prevented.

“What we want is for people to be aware the condition is there and for information to be posted around sports clubs and for anyone who is having heart palpitations not to ignore them.  See a doctor – it could save your life.  Vicky was fit and healthy.  She said she had been having fluttering in her chest.  Then she died.”

MP David Hinchliffe said: “It’s a tragedy what happened to this family, and they are right to highlight the medical condition in cases like their daughter’s.

“Recently there has been some movement in parliament as a consequence of cases like theirs.  A commitment has been given that through a national service framework.  The NHS at a local level will look into cases like this.”

Anyone who is interested in learning more about the condition can contact CRY at www.c-r-y.org.uk.  The Johnson family have also set up a website dedicated to Vicky at www.justgiving.com/SADS which has far raised more than £700 for charity.