A TRANENT dad who moved to America with his young family is fighting to save his baby daughter’s life after she was born with a rare heart condition.
Little Ellory Stevenson (pictured below) was born three weeks prematurely in August and diagnosed with genetic disorder trisomy 18, known as Edwards syndrome.
The condition causes serious heart problems and has no cure but dad Gareth Stevenson and his family have been told that Ellory can have surgery to fix the defects in her heart and give her a better quality of life.
They have been fundraising to cover the cost of travelling from their home in Virginia to Omaha, Nebraska, where the specialist surgery is available and allow mum Christina to spend more time at home caring for her.
Former Ross High Rugby Club player Gareth moved from Tranent to the United States last year with his American wife Christina and their two sons, Jonah, two, and Evan, eight.
Ellory was born on August 24 and diagnosed with the rare condition which means she currently needs breathing assistance, help with feeding and constant monitoring.
The family live in Ruckersville, Virginia, but have decamped to Omaha, Nebraska, 1,200 miles away, where Ellory is awaiting surgery at the local children’s hospital.
Family and friends have launched a crowdfunding page to help support them as they care for Ellory and stay with her.
Ellory spent her first six weeks in intensive care at her local hospital and was receiving homecare until this week when she was flown to Omaha Children’s Hospital in preparation for her surgery as her condition deteriorated.
Gareth, 33, who worked for Glennon Brothers in Humbie before taking a sales position with Virginia Business Systems in the US said: “It’s been a tough couple of days between getting settled in Omaha and realising unfortunately that Ellory’s heart is already in failure.
“Right now she requires a lot of medical support to help her keep these symptoms under control.
“We are hopeful of surgery soon.
“Our precious little girl is fighting and staying strong through all of this, we are so proud of her.”
Ellory’s condition means that she will not be able to go into childcare and Christina only received eight weeks’ paid maternity leave from work, so the family are hoping funds raised will allow her to stay home while they find the right person to provide her homecare.
Gareth said: “Christina’s time off is unpaid leave and it is going to be tough for us financially as we both need to work full-time.
“Ellory has made great progress, she is doing well and come a long way since she was born, ; she has shown us that she is certainly a fighter and we will support her all the way, which means doing whatever we need to to get our baby girl through this.”
Edwards syndrome, also known as Trisomy 18, is a rare but serious genetic condition caused by an extra chromosome.
It is rare for babies born with the condition to reach adulthood.
To support Ellory and her family, go to www.gofundme.com/4ehg394
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