Sonia Dykes and Kayleigh Headland are on a fundraising drive to equip schools in Swindon with defibrillators. TINA ROBINS reports

PARENTING can be a nerve-racking thing at the best of times even if your child is healthy and strong.

But imagine knowing that at any time and without warning, your youngster could suffer a potentially fatal heart attack.

It is something Sonia Dykes and Kayleigh Headland have to live with every day and one of the reasons they are working to persuade every school in Swindon to have a life-saving defibrillator.

Both have come close to losing children to congenital heart defects and their lives have been forever changed by what happened.

It happened out of the blue for Kayleigh just three days after daughter Ellie-Mai was born.

Worried about her crying baby, she called her mother for advice. To no avail. “By the time I put the phone down to my mum, Ellie-Mai was blue. By the time the ambulance got there she was grey.”

Thankfully, she was revived and rushed to hospital. It was there that surgeons discovered her heart was twice the size it should have been and had a hole in it.

“She was basically drowning,” said Kayleigh

Ellie- Mai underwent treatment and, as time went by she was stabilised. Now aged four, she still has a leaking heart valve and is awaiting another operation.

“She gets tired more easily than other children that haven’t got heart problems,” said Kayleigh. “The school is very good with it. She is on medication three times a day and they give it to her at lunchtime.”

When Ellie-Mai started at Beechcroft Primary School last September, Kayleigh asked if the building was equipped with a defibrillator, which uses an electrical current to shock the heart back into a normal rhythm.

It was then that Sonia, who had already started a campaign to encourage schools to invest in the machines and helped Isambard Community School install one in 2015, got in contact.

Together they are organising fundraising events with the aim of seeing defibrillators in all 80 of the town’s schools, where they will be available for anyone, not just pupils, in the event of an emergency.

They have been boosted by the discovery that schools can buy them at a reduced cost as part of a Government scheme using the NHS supply chain.

It meant that the £750 already raised by the Swindon Heart Safe campaign was more than enough to pay for the Beechcroft machine and has given them a head start on fundraising for the next.

Sonia, of Ramsbury Avenue, knows only too well the damage undetected arrhythmia can do. Her son Tyrone, 15, needs 24-hour care after suffering serious brain damage following a cardiac arrest shortly before his second birthday.

As a result a young man who should be enjoying an active life is confined to a wheelchair.

He suffered a cardiac arrest on a visit to the park and was unconscious, unable to breathe for 10 minutes.

A decade later the same thing happened to Tiarna, now a bouncy five-year-old. They had just returned from a shopping trip when Sonia discovered the tot unconscious on her bedroom floor.

Luckily her experience with Tyrone meant she knew what to do and she was able to resuscitate her daughter quickly.

Like her brother, she has now been fitted with an implanted cardioverter defibrillator device because both could suffer a cardiac arrest at any time.

Last May Tiarna’s life was saved by her implant when it detected a dangerous heart rhythm and gave her three shocks.

She was rushed to the Great Western Hospital and later transferred to Bristol Children’s Hospital.

Last year the little girl was in hospital a lot and recently Tyrone has been treated for related health problems. Sonia says she is amazed by the strength and determination shown by the two children.

But she is determined to do what she can to ensure other families do not suffer in the same way, which is why she has targeted the schools.

She was encouraged by the success of the campaign at Isambard and Beechcroft, but with Kayleigh’s help and the support of a small band of mothers, she plans to continue.

“I want to do a lot more schools,” she said. “It is just trying to get awareness out there.”

At least 12 young people die unexpectedly of Sudden Arrhythmic Death Syndrome in the UK every week.

It is the same condition that ended England cricketer James Taylor’s career and almost killed Bolton Wanderers footballer Fabrice Muamba, who collapsed during a game in 2012.

He was revived but it is thought his heart was stopped for 78 minutes. He later launched a cardiac awareness campaign.

Sometimes it is caused by a faulty gene hidden in the family tree. British Heart Foundation-funded researchers at Papworth Hospital have found a way to predict the risk by measuring electrical disorganisation in the heart.

A team of BHF scientists also pioneered the use of ICDs for people at high risk of SADS back in the 1990s.

The organisation Cardiac Risk In The Young, which has Sir Steve Redgrave as one of its patrons, helps young people who have been diagnosed with life-threatening heart conditions and provides bereavement support to families hit by sudden cardiac death.

It also pays for medical research, develops heart screening programmes and funds fast track referrals and cardiac pathology services in some UK hospitals.

Swindon Heart Safe’s fundraising efforts continue with a charity bingo and buffet night on March 16 at the Shield And Dagger, in Thames Avenue.

On May 21 there will be a bubble football fun day at Swindon Rugby Club, including a five-a-side world cup and medals for the winning team. Groups wanting to take part at a cost of £20 a person can email

The campaign can also be found on Facebook and anyone wanting to

donate can visit