Brave transplant toddler Esme Hughes is really getting into the rhythm of life – ticking off a dozen dreams in as many months after being given a new heart.
During a year in hospital waiting for a suitable donor organ, Esme thought of all the things she would love to do, from visiting Disneyland to riding a horse.
And since finally going home last August, she has set about completing them.
Mum Lisa Mallett said: “Esme was in hospital for over a year waiting. Every day we’d add to our list of what she’d do when she finally got out.
“Turning those dreams into reality has been the most life-affirming journey for us all.”
Last week Esme celebrated her fifth birthday surrounded by friends and family – marking a full year of her new life.
She was born with aortic stenosis, a narrowing of the aorta which restricts blood flow to the heart.
That left the organ so scarred she developed cardiomyopathy, with the left side no longer able to pump blood.
As well as needing a new heart, Esme then developed pneumonia followed by parainfluenza.
She was eventually transferred to London’s Great Ormond Street Hospital, where she was kept alive with an external Berlin heart.
Lisa, 37, recalled: “Every day it felt like we could lose her – she was in intensive care before she had the Berlin heart fitted, needing 28 hours of surgery.”
Even the lifesaving device came with risks.
“I saw three children with a Berlin heart have strokes,” said Lisa.
“Some children never recover, and while we never told Esme, we feared the worst.”
Uncannily, Esme herself appeared to predict when her transplant would come. She had been given a doll with a Berlin heart, which the child gets to remove after their own surgery.
Esme took it out and told mum Lisa and dad Kevin: “She’s had her transplant now, we can go home.”
The next day Esme told Kevin she was going get her heart – and minutes later a transplant nurse arrived to give the family the news they had waited for.
Yet it was a moment of heartache too, for the family knew too well the tragedy that must lie behind a donor organ being found.
Sixteen years earlier, Lisa had donated her own daughter Jadene’s heart valves to save another life, after the 11-month-old suffered an unexpected fit in the bath and died.
“I knew how bittersweet it would be to hear that news,” said Lisa.
“Behind our joy was a family who’d had to say goodbye to their child and make the hardest decision possible – if nothing else, I wanted the months and years after Esme left hospital to be a thank you to them, to that family who had given us the ultimate gift.”
Days after the op in July last year, Esme celebrated her fourth birthday.
Lisa said: “We were visited on the ward by her Disney favourites, Belle and Moana.
"Having been in isolation for so many months, she’d constantly said how when she got out she would meet Moana – it was a dream come true for her.
"Seeing the smile on Esme’s face I knew this was the start of our new life.
“I gave Kevin the biggest hug ever and told him we’d make every day special for our amazing girl.”
The next month the family, who live in Reading, ticked the next item off Esme’s list – Disneyland Paris.
Lisa explained: “We couldn’t fly for 12 months so Florida wasn’t on the cards, but Paris was just as magical.
“All the characters she had watched endlessly on her iPad in hospital were suddenly real. We went on so many rides, met all the princesses and she went swimming for the first time.”
In October Esme learned to ride a bike.
Lisa said: “She was so determined, she had zero fear – once she was going I couldn’t get her off it.”
The following month she went to the park for the first time in her life, and in December she did a Santa Dash run with dad Kevin to raise money for GOSH – the hospital that had turned her life around.
Then in January the family were able to welcome two puppies, both German Shepherd- Border Collie crosses, called Max and Belle.
Lisa said: “All Esme wanted to do was lie down and cuddle them.
“Seeing her fall asleep with her two best friends was heart-melting.”
While in hospital, Esme had lost mobility after being ventilated for 14 weeks before her Berlin heart was fitted.
Physios had used Pets As Therapy dogs to get her back on her feet.
Lisa said: “Ever since, she’d said we’d have dogs when she got home.”
February saw Esme enjoy her first ever trip to the seaside, at Milford on Sea, in Hampshire, then in March she held a snake when the family went to Longleat.
Proud Lisa said: “She basically became completely fearless. I wouldn’t go near the snake while she stroked it.”
The next month another of Esme’s dreams came true when she learned to ride a horse at stables near Oxford.
In May, she went ice skating for the first time, then in June she finally started her reception year at school.
And she rounded off her remarkable year last month by celebrating her 5th birthday – complete with piñata, water slide and a princess cake.
Army veteran Kevin, 43, said: “It was the most emotional day imaginable.
“So many times we thought we’d lose her – for to be here now with a clean bill of health and a new heart… words can’t describe the joy.”
Lisa added: “I just wish the family who donated the heart could have been here with us for Esme’s big day.
“She’d have shown them her dogs, whizzed down the water slide and shown them tricks on her bike.
“Nobody cherishes life as much a family given a second chance.”
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