A heartbroken couple who lost their son to cot death are hoping their tragedy may help solve the mysterious syndrome that has claimed hundreds of babies lives.
Dexter James Cook from Greetland died suddenly in his sleep on May 30, 2014, just a few weeks after his first birthday.
His devastated parents, James and Gemma, were told their son had passed away from Sudden Infant Death Syndrome (SIDS).
SIDS claims more than 200 babies in the UK each year and, sadly, many deaths are never explained.
Now, in a search to understand what is happening, Dexter’s father James and fiancé Gemma have allowed Dexter’s DNA to be used in a pioneering study into SIDS.
They have now been told a rare genetic condition, never seen in a child before, could be the cause of his death.
The study at St Mary’s Hospital in Manchester may be the key to unlocking the mystery of why infants with no existing symptoms suddenly die.
A formal inquest will be held in Heywood next month where it is expected scientists could reveal more.
James said: “We managed to get Dexter’s DNA used in this study and we’ve just found out he had a genetic heart condition.
“It’s so rare it hasn’t even got a name.
“The doctors seem quite excited as this may help answer some of the questions about SIDS.”
In the meantime James and Gemma are continuing their work with the charity set up in their son’s name, Dexter’s Light.
Their fundraising aims to raise cash for sensory equipment for other parents to use.
James said Dexter loved sensory rooms which include neon lights and other equipment to stimulate the senses.
But he said they often had to travel to Leeds to use one as it was hard to get access for able-bodied children to sensory rooms around Kirklees or Calderdale.
“We wanted to create somewhere to go in his memory,” said James.
“At first we thought a garden or a structure and then we thought a sensory room as Dexter loved them.
“Then we thought it would be even better if it was portable so we can take it to people who need it – parents who need respite from care, for instance.
“We could take it to their home, draw the curtains, make the room dark and they can have a sensory experience in their own home.
“We need to raise £15,000 to buy the equipment and we could also loan it to groups at community centres, crèches or village halls.”
Dexter’s Light has already raised £7,500 for SIDS charity the Lullaby Trust and helped revamp the graveyard and raise £1,000 for St Thomas’ Church, Greetland where Dexter is buried.
Now they are £5,000 into their £15,000 target to buy the sensory equipment which can stimulate all senses including sight, hearing, touch, and smell.
Sensory experiences have been proven to develop tots’ cognitive skills and language development.
James, who hails from Salendine Nook and turned out hundreds of times for Mount and Huddersfield YMCA football teams, now hopes another £5,000 can be raised an evening of entertainment at Cedar Court Hotel at Ainley Top.
The charity dinner will feature a close-up illusionist, band Helter Skelter and fantastic raffle prizes and auctions, including a villa holiday to Spain for 10, a behind the scenes experience at Emmerdale and prizes donated by Huddersfield Town and Giants.
Tickets via www.dexterslight.org.uk/contact or from James on 07789 555710.