A NURSERY nurse from Flintshire who had struggled with a heart condition since birth has died at the age of 21.
Samantha Louise Edwards, of Forest Drive, Broughton, had been at the top of the national urgency list for a heart transplant.
Samantha, a former pupil of St Richard Gwyn High School, Flint, who worked at Broughton After School Club before her condition deteriorated, was receiving life-sustaining treatment at a Newcastle hospital while she awaited a transplant.
A funeral service, planned by Samantha herself, will be held tomorrow at Chester Crematorium.
Her father Rob, who gave up his job to be her full-time carer, said the family knew from birth that she might not live to an old age.
“She was born with complex congenital heart disease but had a multitude of things wrong and people didn’t even realise,” said Rob, 44.
“Her organs were back to front and side to side, and she only had half a heart.
“She had a complicated and strict drug regime and gave herself injections and blood tests at home.
“We knew since she was born she might not live that long. She became very poorly about 16 months ago when she got a clot in her heart and that was the start of her troubles.”
Samantha, who died on January 14 , was listed for heart transplant on Christmas Eve, 2008.
Rob said: “She had very high antibody levels which made finding a suitable donor really difficult.
“She had a risky operation in January last year which took away most of her heart and left her with only one pumping chamber.
“Then she had another operation in the April and got really poorly so the doctors decided on a revolutionary treatment for her which takes the plasma in the blood away to clean it then puts it back into the bloodstream.
"She had that treatment two or three times a week at a hospital in Newcastle. That proved to be really successful and she was listed for transplant again. She went to the top of the national urgency list.”
Although Samantha had offers of a new heart, none was suitable.
“She was really excited about getting a new heart and getting home and leading a normal life because she had never experienced a normal life,” said Rob.
“She had 11 offers of hearts but they were not suitable – either too old or they had trauma. In the end she just lost her life very fast.”
Samantha also leaves sisters Lauren, nine and Rebecca, 26, brothers Mike, 22, and Ben, 23 and stepmum Sharon.
Rob said his daughter was one of a kind. “The hospital staff said they had not experienced anything like her. She touched everybody’s life.
"Sam never ever moaned about her predicament. She always made the best of her situation. She loved her family and her brothers and sisters.”
Derek Doran, headteacher of St. Richard Gwyn High School, said: “The school is devastated to hear of the sad news. It is just tragic to hear of a young life taken away at that age.
“We are praying for Samantha and her family when we have Mass and we will also be making our presence known at her funeral on Tuesday.”
The Paul Simon song, Father and Daughter, will lead tomorrow’s funeral service and Footprints in the Sand by Leona Lewis, handpicked by Samantha, will be played in her memory.
“Before she died Samantha made an end of life plan where she actually planned her own funeral and what songs she would like to play,” said Rob.
“For Father’s Day she bought me an iPod and put on it all the songs she knew I’d like, and that’s where Father and Daughter comes from.”
Her family will be handing out organ donor forms at the service to encourage more people to join the UK register.
Donations will be given to the Grown Up Congenital Heart Patients’ Association (GUCH).
Rob added: “I’d like to say a special thank you to all the staff at Newcastle Freemason Hospital who helped Sam. They were amazing.”
Samantha’s death comes after a fresh call was made for people to join the organ donor register.
Health Minister Edwina Hart said she would seek legislative powers to change the law in Wales that, if successful, would mean everyone would be assumed to be an organ donor, unless they had opted out during their lifetime.
To join the register call 0300 123 2323, text SAVE to 84118 or visit http://www.donatewales.org.
If you would like to leave a tribute to Samantha, please write a message below.
See full story in the Leader