Little Jacob White’s parents were told to prepare for the worst.
The tot had a bleak outlook from birth when he suffered a serious bleed to his brain and was diagnosed with Schinzel-Giedion syndrome.
He could not breathe for himself and suffered a blood clot close to his heart after an operation to check his bowels
Jacob was put on a life support machine – and medical staff discussed switching it off with his heartbroken parents Kerry and Darren.
“Jacob was very poorly when he was born,” said Kerry, aged 38, from Maltby. “He weighed just 2lbs 9oz and was very swollen. He wasn’t feeding and kept being sick.
“He couldn’t breathe for himself and was transferred from the Jessops in Sheffield to Alder Hey Children’s Hospital in Liverpool for an operation to check his bowels.
“He was on full life support and not showing any improvement – there were discussions about switching his life support off.
“Doctors didn’t expect him to see his first Christmas and transferred him back to Jessops – but then one day he just started breathing for himself and went from strength to strength.”
And the miracles continued the following year when Jacob’s parents agreed for their son to take part in a DNA study. The results revealed the tot did not have terminal Schinzel-Giedion syndrome but was suffering from Noonan syndrome.
The genetic disorder causes a wide range of health issues, including heart abnormalities and restricted growth – but almost all children with the condition reach adulthood and lead full and independent lives.
Due to his turbulent start in life, Jacob has ongoing lung problems, is severely delayed in terms of development for his age and is fed through a peg in his tummy.
He is also only the size of a 12 to 18-month-old, but continues to surprise medics and his proud family with his ongoing progress.
Kerry said: “We were told he wouldn’t survive, he could be deaf and blind, he wouldn’t walk or talk but he has overcome all the odds. We are incredibly proud of him, he’s a little miracle man.”
After enjoying their first family Christmas without the fear of a terminal illness hanging over them, the family, including Jacob’s siblings Leo, six, and 22-month-old Mia, are looking forward to 2015.
Jacob continues make improvements, attending Maltby’s Hill Top special school on weekday mornings and mainstream Redwood school in the afternoons.
The happy tot also enjoys timeout at Bluebell Wood Children’s Hospice in North Anston, Rotherham, which gives Kerry and Darren a much-needed break, knowing he will be properly cared for in their absence.