A cardiac nurse whose husband died suddenly at 30 of an inherited heart disease is hoping to learn more about the condition to help her teenage son.
Ray Power-Jones, with Elis as a baby, had appeared fit and well
Ann Power-Jones' son Elis, 13, is receiving regular checks for cardiomyopathy, the biggest medical cause of death for under-35s.
No trace has been found in Elis, but early detection could save his life.
Mrs Power-Jones, of Bridgend, was due to attend an event in Cardiff to discuss new research and treatments.
Mrs Power-Jones' husband Ray appeared to be fit and healthy when he collapsed at work 10 years ago.
It took a post-mortem examination to reveal that he had died of hypertrophic cardiomyopathy.
"He was a very fit 30-year-old who was devoted to his family," said Mrs Power-Jones.
"He played rugby and squash, and ran every day. He ate healthily, never smoked and drank very little."
The condition usually develops in the teenage years and can cause the heart muscle to thicken, which can lead to dangerous heart rhythms.
It is estimated that cardiomyopathy affects about one in 500 people of all ages, including babies, and four young people die from it each week in the UK.
Some affected people live full lives unaware that they have the condition, while others can be treated using drugs, pacemakers and internal defibrillators.
As a cardiac nurse, Mrs Power-Jones said she knew a little about the condition and that there were implications for their son, who was three at the time.
In her search for more information, she founded the Cardiomyopathy Association, which funds clinical care and campaigns for more health screening and gene testing for affected families.
Her husband's parents and brother were sent for heart checks, which revealed his father Michael also has the condition. He remains fit and well.
The family are undergoing genetic testing to see if the mutant gene can be found. It will then be possible to test other family members to see if they are at risk of developing the condition.
Mrs Power-Jones said: "The last ten years have been difficult, but Elis has kept me going and I am very positive about the future.
"He is being seen by doctors in Cardiff and Great Ormond Street Hospital (in London) every six months but currently shows no signs of the disease.
"But if he is diagnosed in the future I know he will get the best care with the most up-to-date treatment options.
"Despite my worries, Elis leads a full and active life and is always out skateboarding and biking with his mates. And if he is diagnosed he will be in a much better position than his father ever was."
The information day in Cardiff was organised by the Cardiomyopathy Association and due to be attended by families from across Wales and south-west England.
On the agenda were speeches from medical experts on the condition and a discussion of the three main types of cardiomyopathy - hypertrophic, dilated and arrhythmogenic right ventricular.