A WATCHET couple whose 13-month-old son died after falling victim to two chronic diseases have channelled their grief into launching a charity to improve the life chances of others affected.

Donna and Paul Stevens have set up Elliot's Touch to raise awareness of mitochondrial disease and cardiomyopathy and provide funds for research into the conditions.

Elliot died in March after spending four months in intensive care in hospitals in Bristol and London during which time he was diagnosed with both diseases.

Cardiomyopathy affects the heart muscle, compromising the organ's ability to pump blood around the body, while mitochondrial disease is a rare genetic condition which can affect any organ but which leaves cells unable to produce enough energy to work.

Now, working with the Somerset Community Foundation, Donna and Paul hope their efforts and those of their family, friends and many supporters will help fund vital research and find cures.

Donna told the Free Press this week that the months since Elliot became ill and those following his tragic death had been traumatic.

"He was such a healthy baby to begin with – he didn't even have a cold," she said.

"Then there was a slight problem with his weight and we thought he might have a dairy intolerance."

But Elliot's real difficulties began last November when he was admitted to Taunton's Musgrove Park Hospital with suspected dehydration after suffering gastroenteritis.

It quickly became clear that something more serious was wrong with the youngster and he was transferred to Bristol Children's Hospital where he was diagnosed with dilated cardiomyopathy.

Despite showing signs of recovery after treatment, Elliot's condition began to deteriorate to the point where his heart required a mechanical pump and his parents were told he needed a heart transplant.

On New Year's Day Elliot was transferred to London's Great Ormond Street Hospital where he was further diagnosed with mitochondrial disease.

Although he underwent four successful operations and survived a fifth, Elliot - who was Paul's only child and the couple's first together - died just hours after his final surgery on March 3.

"Elliot was our hero, our inspiration and he could always light up a room with his gorgeous smile and big blue eyes," said Donna.

"We were so proud of him and his determination to live.

"He had to endure so much – some of the procedures were so invasive, it was just awful.

"After each operation he showed signs of improvement but then he would go downhill again.

"It was like somebody was torturing us but we had to keep the hope that he would get through it."

The couple hope the charity will provide the final £30,000 needed for a £177,000 research project into mitochondrial disease at Great Ormond Street Hospital.

But they also hope it will help fund a major initiative to establish a genetics research team in Bristol, which could need an investment of hundreds of thousands of pounds.

"If we can do anything to help other people affected by these conditions, we will feel we have achieved something," said Donna.

"We want to do Elliot proud and keep his memory alive."

One of the first fundraising initiatives, organised by supporters in Watchet, will be an open gardens event from 2pm to 5pm next Sunday (June 21).

Organisers have pledged that all the money raised from 'Behind the Walls' will go to Elliot's Touch.

"It's a cause close to our hearts in Watchet as this is a local family," said a spokesman.

For a £2 ticket, visitors will have access to six town centre gardens.

"They are all very different but more than anything they are not show gardens but working, daily use gardens," said the spokesman.

The garden 'tour' begins in the Market Street car park and visitors can round off the experience with a cream tea at the Phoenix Centre on the Esplanade.

"We want to say a big thank you to the garden owners, the Phoenix, people who have offered to make cakes and the Watchet Co-op for donating cream and jam.

"We just hope people will turn out to support the event and boost the funds of such a very worthwhile cause."

And the following day Donna and Paul will be taking part in a 10k run organised by the Hinkley Point nuclear power station complex, where Paul, his brother and his father all work.

Find more on Elliot's Touch and how to support it at www.

elliotstouch.org.