Bethany is my youngest daughter. I was blessed to have three daughters but Bethany was a special child who filled our lives with love and laughter, fairies and dinosaur noises.

When Bethany was only three days old the pediatrician came to my bedside in the hospital and told me that something was wrong with Bethany’s heart but he didn't know what it was. We were sent by ambulance to the Prince Charles hospital where after many tests, I was told by the specialist that he suspected she had the condition called prolonged QT syndrome. Throughout Bethany’s first year of life I had to take her back to the specialist every three months and he confirmed his original diagnosis. Of course we had never heard of this condition and were told it may not affect her in any way or on the other end of the scale it could mean sudden death. They decided to just monitor Bethany and not commence any treatment. This heart condition wasn't a reality to us as we had this seemingly normal healthy happy little girl.

When Bethany turned two she became a very anxious, clinging child prone to tantrums and for the next year was quite a handful. In her third year she was running up the stairs crying when she collapsed and was rushed to the hospital in cardiac arrest. We came so close to loosing her but after a traumatic week in hospital, she recovered and the specialist then started her on Beta Blocker therapy, three times a day.

The dreadful reality of prolonged QT syndrome was now starkly with us and we now lived every second of ever day knowing that she could collapse and die at any time. The years passed and Bethany started school and lived a normal life except she wasn’t allowed to go swimming or take part in any school sports. Bethany and I became very close and she would hate to leave me even to go to school which she loved. In the afternoon she would be the first out of the school gate to be with me again. She did very well at school and was a bright and popular student.

When Bethany turned nine she became increasingly anxious and very highly strung. I noticed she would tire very easily and I felt that something was terribly wrong. I took her back to the hospital and they fitted her with a halter monitor for her heart. She carried this around for two days. One morning her specialist rang me and told me that her heart was beating so slow that she could die in her sleep. He arranged for her to be implanted with a pacemaker. We were told she would then have a long life ahead of her and would be able to do sports and whatever she liked. We thought at last she would be safe and the fear of the consequence of her heart condition was lifted from us.

One night Bethany told me that she felt tired again, she then put her head on my shoulder and told me she could hear a lady calling her name and that she didn’t want to leave me. The next day, only three weeks after receiving her pacemaker, she was playing with her best friend at school when she suffered another cardiac arrest. A two hour fight to restart her heart left her with profound brain damage. She remained on life support for the next seven days but her empty staring eyes never looked lovingly into mine again.

Bethany died two days before she was to turn 10. I am writing this as I wish other parents to be aware that even though their child may be on Beta Blockers and be fitted with a pacemaker, this heart condition can still mean they are in danger of loosing their child. Never be complacent thinking that the medication and pacemaker will keep them safe. Spend each day with your child as a treasured blessing.

Bethany Hope – a sweet spirit too precious for God to leave on this world too long. She is loved and adored and so sadly missed by her mummy, daddy, Lisa, Bernadette and Sharkey.