After their teenage son died of sudden death syndrome on the football pitch, Alice and Stephen Reading channelled their grief into raising awareness.
The couple have been working with the charity Cardiac Risk in the Young, known as CRY, to highlight the risk of sudden cardiac death and sudden death syndrome in young people.
"We went to Downing Street to try to raise awareness of the voluntary testing," explained Mr Reading.
"If we can save just one other family the grief we've had it'll be worth it."
The Readings were in London to attend CRY's launch of a new initiative pushing for voluntary screening in young football players.
They met the Secretary of State for Media Culture and Sport, Andy Burnham, as well as other parents of children and young people who died suddenly while playing football.
"We would like to find out why nine fit and healthy young people die every week in this country from SADS," said Mr Reading. "We may never know what caused this to happen to our wonderful Edward, but we will never rest until we find out."
Ed's brother Sean and friend Martin Upton ran the London Marathon in his memory this year, raising £4,500 for CRY.
The charity's founder and chief executive, Alison Cox, said: "Sudden death syndrome is completely indiscriminate. Most people have no symptoms – the first symptom is that you will die. Ed would have been dead by the time he hit the ground. It's like a light going out.
"What our families would like to see is every young person at school being screened."
Mr and Mrs Reading gave permission for a pathologist at the Queen Alexandra Hospital, Dr David Coleslaw, to take part of their son's heart to one of the country's top experts in the field, consultant cardiac pathologist at Southampton General Hospital, Dr Patrick Gallagher.
"We believe there are at least 400 deaths each year in the UK which can be attributed to SADS, all in young people aged under 35," Dr Gallagher said. "It's very important in terms of the education of other pathologists and increasing the profile of the condition that we can examine the heart.
