The family of a baby boy who is fighting for his life after being born with a rare condition have made an emotional plea for the present that would make their perfect Christmas – a new heart for their little warrior.
Benjamin was born in August with Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of his heart was not formed properly during pregnancy.
He has remained in hospital in Newcastle since his birth in August, with his parents, Ashley Hardy and Davy Rayner, taking it in turns to spend time at his bedside, alongside his sisters Sharlene (8) and Jessica (5).
Baby Benjamin has already had two surgeries on his heart, and is due to have a third soon.
The family have been told he could need to spend another year in hospital and will need a heart transplant in the future – a procedure which could be needed sooner rather than later.
Mum Ashley, from Orton Goldhay, has now urged as many people as possible to sign up to the organ donation register to help Benjamin and others like him.
Ashley said: “I have had a number of miscarriages, but with Benjamin we got to the 22 week scan and were told he was a boy – I have always wanted a boy – but also something was wrong with his heart.
“We were told he had HLHS ... basically he only had half a heart.”
Ashley had suffered nine miscarriages, all boys, before she gave birth to fighter Benjamin.
Benjamin’s condition means parts of his body are not getting enough oxygenated blood, while others are getting too much.
He has spent most of his short life connected to various machines at the Freeman Hospital in the North East, to monitor his progress and keep his oxygen at the correct levels .
He was born at the Newcastle hospital. Ashley said: “When he was born I got to have a one minute cuddle, before he was whisked away.
“Within a week he was put through heart surgery and put on the heart transplant list.
“He nearly died in my arms, but was resuscitated. At one point his right lung collapsed. I couldn’t hold him for five weeks, and he spent eight weeks in intensive care.His saturation levels keep dropping and then going up - he is so tired and he sleeps all the time. He is on a high level of oxygen to support his heart.”
Doctors are now preparing to carry out a procedure called a Glenn Shunt, which works to establish some of the important connections to the heart.
They will also try to wean the youngster off some of his medication in preparation for the procedure.
Ashley said: “The only other option would be to have a transplant. It would break my heart, because we know where the heart would come from. But he will need a new heart eventually. It’s so important for the public to sign up for organ donation. The move for it to be a ‘sign out of’ donation rather than ‘sign up’ is good news. I would urge everyone to sign up to the organ donation register to help people like Benjamin.”
Benjamin’s story has been shared thousands of times on social media, with messages of support coming in from across the world.
Updates are posted on the ‘I am The Warrior – Benjamin’s Page’ page on Facebook.
Ashley said: “I love my little prince so much. He has been fighting so hard. It has all been overwhelming.”
A fundraising page has been set up to raise money to support Benjamin’s family and help them spend more time in Newcastle, and to buy a few presents for the tot.
It has already more than doubled its original £350 target total, with hundreds of pounds being donated to the family, and a second page has now been set up.
l For more information, or to make a donation to Benjamin’s family, visit: www.paypal.com/pools/c/80fJai7o7Q
l To sign up for the organ donation register, or for more information, visit www.organdonation.nhs.uk