Christine's Story

A MOTHER'S VERSION!
Dear SADS AUSTRALIA

It is so nice to be connected and to be your pacemaker pals!! We have had a pacemaker in our family for the past four years, and as a mother of a child who received a correct diagnosis and treatment for Long QT Syndrome, despite many 'close calls,' hardly a day goes by when I do not give thanks. We lead a normal life, and I no longer have my ear to the bathroom door when she is in the bath. I no longer jump when someone drops something in the house, and I simply wave goodbye when she babysit's or goes out with friends. I no longer tip toe into her bedroom to check her breathing, or sleep with a baby monitor on my pillow. Education does save lives and we have a beautiful sixteen year old to prove it!
Congratulations on a great website. You are providing such a service 'down under' and around the world!!
Keep in touch!

OUT AND ABOUT - LQTS IN GUELPH, ONTARIO, CANADA by Christine Bretherick

A few years ago my daughter Andrea Jones wrote to our local Heart and Stroke Foundation commenting on a poster which showed a grandfather holding a little girl's hand. The caption read "He has a pacemaker. She has a grandfather." In Andrea's case it was the other way around. She had the pacemaker. Her grandfather still had a granddaughter.
She thought that it seemed unfair that everyone thought that pacemakers were for old people, so she decided to make her case in writing! Andrea soon received a phone call from the association which resulted in her speaking at school assemblies to promote their 'Jump Rope for Heart Campaign.' Her message clearly conveyed that children also experience heart problems even though society perceives heart trouble as an old person's disease. Andrea told her story about how difficult it had been for her family to find a diagnosis for her Long QT Syndrome. Her first episode of cardiac arrhythmia was in a swimming pool where she was dragged from the bottom and resuscitated while swimming with her Grade Four class.

Of course no-one had any idea and it was considered a freak accident. Her second was a few months later at a Fall Fair where she lost consciousness after one rotation on a fast ride, and the third the following summer when she fell face first while wading in shallow water after running down a beach. Artificial Resuscitation was administered once again. Andrea also survived a series of 'faints,'in between these episodes, yet there was not one suggestions from any doctor or specialist that this healthy eleven year old could be experiencing heart problems. Medication for epilepsy was offered by one pediatrician even though her brain scan was normal.

Andrea is soon to be sixteen and is looking forward to her driver's education and getting behind the wheel! She has not experienced an 'episode' since being treated for her LQTS at the Hospital for Sick Children, Toronto,Canada, four years ago. She is about to embark on a venture with the Alcohol and Drug Recovery Association of Ontario. Their 'High On Life' program is designed to provide positive messages to youth, and to others in the community. Andrea wished to develop her public speaking skills and wrote to them explaining that she had every reason to be High On Life! They quickly responded by welcoming her as an ambassador, and are in the process of arranging her speaking engagements out and about in the community! Andrea of course continues to promote awareness of LQTS while adding value to her resume!