Donna and Paul Stevens could not be more overjoyed. Little Elliot would be their first son after their fairytale wedding in August 2013.
Born on January 26, 2014, their beautiful baby boy had big eyes and before long, was melting hearts with the most adorable smile.
“He was perfect” says proud mum Donna.
Everyone adored the baby of the family and queued up for cuddles and to read him stories. He was just so gorgeous – giggling away when his toes were tickled... This little piggy went to market… and until he was 9 months old, the family was blissfully unaware anything was wrong.
But what began as a normal Saturday morning on November 15 2014, turned out to be the day Donna and Paul’s lives would change forever, when their little boy fell poorly.
“By the afternoon I could tell he was feeling unwell and so, as a precautionary, I took him to Taunton Musgrove Park Hospital,” says Donna.
She had done the right thing. Elliot was not simply under the weather, but had an undiagnosed heart condition. His little heart was struggling.
Doctors called for help from Bristol Children's Hospital, and an ambulance was dispatched immediately. It was now an emergency, as medics kept his heart going after cardiac arrest. Donna and Paul were terrified that Elliot’s tiny little body would not cope.
Luckily, they arrived in Bristol safely. But, after diagnosis Paul and Donna were told that Elliot son was suffering from dilated cardiomyopathy — a condition which affects the heart’s ability to pump blood – and mitochondrial disease, which inhibits the body’s ‘powerhouse’ cells from keeping vital organs functioning properly.
“The only thing that could save Elliot was a heart transplant,” Donna explains.
The weeks to follow were uncertain and scary. The festive period was approaching, but now it all seemed so different, with Elliot spending his first Christmas in hospital.
He underwent open heart surgery four times, to enable doctors to connect a network of pumps and tubes tubes to his tiny body to help keep his heart going, oxygenate his blood and circulate life-saving drugs around his system.
“This was such a distressing time for Paul and me, as we had to witness the results of the almost brutal surgery necessary to attach the machine directly to Elliot’s heart,” remembers Donna.
Then came some good news – Elliot could be transferred to Great Ormond Street Hospital for the assessment that could lead to a heart transplant.
Still connected to the equipment keeping him alive, Elliot was conveyed from Bristol to London in a specially equipped ambulance, arriving in the capital just as the Lord Mayor’s New Year's parade was taking place. Elliot’s ambulance became a part of the procession — his very own claim to fame.
A couple of days before his first birthday, Great Ormond Street surgeons told a relieved Donna and Paul that Elliot could be placed on the transplant list.
His condition stabilised, enabling him to be disconnected from the machine that had been helping him to breathe.
After an intense few months of surgery and heartache, things were looking up.
“To our absolute delight he was now even breathing without the need for the ventilator which he had been relying on for the last four months,” Donna said.
Then, on March 3, 2015, Elliot died. Their little champion had survived a fifth open heart operation, but devastatingly, had contracted sepsis. His little body simply couldn’t battle the infection.
“After being at his side every day of his battle, we were in absolute awe of the resilience and sheer determination of our brave, little hero,” says Donna, who with Paul was determined to give other little ones a fighting chance, in his memory.
Three months later, they launched Elliot’s Touch with the help of Somerset Community Foundation. The charity supports families with children living with similar heart conditions, and also raising money to help Great Ormond Street Hospital treat young patients and research a cure for mitochondrial disease.
They also hope that research into cardiomyopathy will help both children and adults be diagnosed at an earlier stage of the disease, enabling them to receive treatment sooner.
Paul and Donna have teamed up with cardiomyopathy expert, Dr Sanjay Prasad, who is working towards finding a simple and effective way to test for cardiomyopathy, so that children and adults with the condition can be diagnosed and treated sooner.
“Our goal is very simple – to embody Elliot’s inspiration to stop any other child suffering in the way he did,” says cardiomyopathy expert Dr Sanjay Prasad.
“We were so proud of Elliot’s determination to live,” says Donna.