A South Yorkshire couple left heartbroken over the death of their two-year-old son are using the tragedy to try to save lives.
Jack Linford lost his fight for life after a sickness bug caused his tiny organs to shut down and his brain to swell.
The toddler suffered from a rare metabolic condition which prevented his body from converting certain fats to energy, particularly during periods without food.
Jack’s five-year-old brother Alex also suffers from the same condition, known as VLCAD.
The condition affects just one in 140,000.
Simon and Laura, from Samuel Road, Gawber, Barnsley, are determined to ensure that their beloved blonde-haired, blue-eyed boy did not die in vain.
They want an extra test added to the newborn screening programme - the heel prick - to help detect the condition and save lives.
“The condition can be fatal but with a low fat diet and no fasting it is manageable,” said Laura.
“There is a test for another metabolic condition, so if they can screen for that why can’t they screen for this one too so that more babies can get diagnosed at birth.
“A lot of children suffer cot deaths and it often turns out that there was a metabolic issue, this extra test could pick another condition up and hopefully save lives.”
Laura and Simon have spoken to their MP, Dan Jarvis, about their campaign and hope that the issue will be discussed by MPs in the Houses of Parliament.
They have set up a website detailing the plight of Jack and his brother Alex and have found two other people in the UK with the same condition - a young boy and a 32-year-old woman.
Laura, aged 25, who said she is ‘devastated’ at the loss of her son, said she wants some good to come from his death, which happened in September.
“It destroys you to lose a child but we have to keep going for Alex,” she said.
“All I want to do now is raise awareness -that is what keeps me going.
“What good is sitting around crying going to do? I need something good to come from all this.”
The family, friends and relatives have raised thousands of pounds in memory of Jack - £1,800 of which is in an account set aside for the charity Climb, which supports people with metabolic diseases.
Another £1,500 was recently donated to the children’s ward at Barnsley District General Hospital to pay for new equipment in a sensory room.
A friend is planning a sponsored skydive in the summer and a family fun day is to be held on August 1 - what would have been Jack’s third birthday.
His brother Alex, a pupil at Summer Lane School, has spent most of his life in and out of hospital.
Laura said the family takes ‘one day at a time’ but with careful management the prognosis is good.
She said the youngster is sensible with his food - even when he has to take his own packed lunches to friends’ parties.
“I don’t think he minds it - it makes him feel special,” said Laura. “While he is this young age I can’t risk anything - not only him eating the wrong foods but waiting too long between meals as fasting can be fatal if his blood sugar levels drop, so I like to be with him.”
To find out more out the condition and the family’s campaign visit The Linford Family on Facebook.