A SIX-YEAR-OLD girl from Clevedon who almost died of a rare heart condition before having a replacement fitted, is due to compete in the British Transplant Games this week.

Mary Elton Primary School pupil Sofia Allarakha-Bapushah, was rushed to Bristol Royal Infirmary in 2009, following a bout of viruses when she became sleepy and was ‘grunting fast while trying to breath’.

In intensive care she was put to sleep to rest her heart and she was diagnosed with dilated cardio-myopathy, where the heart enlarges to three times its normal size, is unable to function properly and leaks fluid into the lungs, preventing breathing.

Her frantic parents, Leah Shah and Faisal Allarakha-Bapushah were told if they had not taken her to hospital, Sofia, aged three at the time, would have died within days.

Leah said: “It was so scary and the worst day of our lives.

“She had never had a heart condition until then so this was a complete shock to us.”

Sofia’s condition got worse and after recovering from an induced coma, doctors transferred her to Great Ormond Street Hospital in London and put her on the transplant waiting list.

Still battling to survive, surgeons fitted a mechanical heart but as she was coming round from the operation the transplant team offered Sofia a human heart.

Leah said: “We couldn’t believe it and we were in a whirlwind.

“She took a while to recover because to begin with they were unable to close her rib cage as the new heart was slightly bruised and would stop if they tried.”

Sofia had to learn how to walk again but made ‘an amazing’ recovery and manages to lead a normal life, says Leah.

She added: “When a doctor tells you your child has a life expectancy it is the worse fear you can ever live with.

“So with this in mind we live every day to its fullest and she has chosen to use it to promote organ donation.”

Sofia competed at the 2010 British Transplant Games, held in Bath and organised by Transplant Sport UK, winning a gold medal for a 25 metre-sprint, a silver in ball throwing and a bronze in the obstacle race in the aged five-and-under categories.

Last year, she competed in the 2011 Belfast Games where she scooped gold and two silver medals.

Sofia will compete in the 50 metre-sprint, obstacle race, ball throw, table tennis and long jump during this year’s games at Medway, Kent, which start tomorrow (Thurs).

Her family, including grandparents and her great-grandmother, will cheer her along as she supports the Great Ormond Street Heart and Lung Team.

Leah has since become a trustee of a charity called Amelia Matters, which helps children who suffer from congenital heart disease and is organising a gala ball which will be held at Doubletree by Hilton Cadbury House Hotel in Congresbury, on February 9 next year.

More details can be found at www.amelia-matters.org.uk while organ donation information can be obtained via www.organdonation.nhs.uk/