A grieving mother is determined to increase public awareness of the rare conditions which if undetected can lead to sudden cardiac death or sudden adult death syndrome, which she believes killed her son.
Anne Wall is still distraught over the death of her son Craig, 26, who died after falling out of bed, having possibly suffered a heart attack.
She has joined the charity Cardiac Risk in the Young (CRY), which supports the relatives of those who have died in this unusual way.
The group faces an uphill struggle in getting the syndrome officially recognised which is why Mrs Wall has gone public with her story.
Pathologists had told her they could not determine the cause of Craig’s death, so an open verdict was recorded at his inquest. This left Mrs Wall devastated but determined to fight on.
“The pain and torment of not knowing how your child has died is indescribable, unless you experience it for yourself,” she said.
“If you have, you can’t begin to tell anyone how you feel inside on hearing that your child has died for no cause.
“I had never heard of sudden adult death syndrome. We will not get over this, but we can try to change the future so other youngsters can live longer.”
She was contacted by CRY and met North Wales and Chester representative Doreen Harley, whose daughter Lisa Jane Browne died in her sleep in January 1998. She worked as a children’s nurse at the Countess of Chester hospital.
There is a belief that the syndrome is hereditary and Mrs Wall is going to be screened for possible signs of any genetic malfunction.
“I am going down to St George’s Hospital in London in February for screening, which is available through your own GP or CRY.
“This is a killer of our young people and happens without us knowing if we have the gene or not. But families can be screened to determine if they have it. Why wait until it happens to you? Do it now,” she added.
Mrs Wall will start fundraising in Craig’s memory next year to help CRY buy all the equipment possible to help families have screenings. Electrocardiogram (ECG) screenings test for the electrical conduction pathways around the heart and Echocardiograms (Echo) look at the structure of the heart and valves.
Screening is advisable if there has been any sudden deaths in your family, or any young person suffers breathlessness, palpitations, dizziness, fainting or blackouts.
