Little Samuel Davy is a very special birthday boy!
The toddler, from Gleadless Townend in Sheffield, reaches the age of two today - despite being born with only half a heart.
Samuel was given just a 10 per cent chance of surviving major surgery as a newborn baby, then battled through a second open heart operation shortly afterwards.
In a few months’ time he will have to undergo a third big cardiac procedure - but for now his mum Rachel and dad Richard are celebrating a full 12 months without any hospital emergencies for the infant.
Rachel, aged 28, said: “He is still poorly but, to us, we’ve had a normal life. We always said we would celebrate every step that he takes.”
Samuel, his parents and older sister Emmie have even been able to go on a fun trip to Disneyland Paris, where he received VIP treatment.
“He absolutely loved it, he still goes on about it and he’s only two,” said Rachel, who has recently returned to work, assessing people who need care packages.
“The staff were really nice and made it extra special.
“He got to go in different entrances for children with serious conditions who struggle queueing, and he met all the characters.
“It was amazing, like a dream. It was a bit scary leaving the country with him, but thankfully it went really well.”
As well as being inundated with cards and presents, Samuel was treated to a birthday tea yesterday at The Old Rectory in Handsworth.
Samuel was born with rare hypoplastic left heart syndrome, where parts of the muscle are underdeveloped.
Scans spotted a defect while Rachel was pregnant, and doctors arranged for her to give birth at Leeds General Infirmary, close to its specialist children’s heart unit.
Just three days afterwards she and Richard, 38, were told their son was unlikely to survive the first of three major operations he needed to reconstruct the organ.
The surgery took place at the Evelina Children’s Hospital in London.
Rachel has thrown herself into charity work over the past 12 months, raising thousands through a skydive and other events. Samuel is also enjoying playing with other youngsters at the Kids@Work nursery in Carbrook.
“We just want to enjoy the time before his surgery and try not think about what could happen,” she said.
“We’re making the most of our time now while Sam is fit and well, because we don’t know what will happen in the future.”
The couple hope Samuel’s heart can survive until adulthood, when there is a higher chance of a donor organ being available.
“His heart will eventually start to fail because only half of it is doing the job,” said Rachel.
“There aren’t many donors for children and it would be difficult if he needed a transplant.”
She said the experience of bringing up Samuel had made them ‘totally different people’.
“We’re very humble - it does change your life,” she said.