Harmy, who is now 17 years old, was just three when she had her first seizure, during which her lips turned blue, and her heart stopped. After months of continuous seizures, despite all tests for epilepsy returning negative, GPs and consultants who saw her continued to say that this was what it was. After a further year of tests, I refused to put Harmy on Epilepsy medication as I knew in my heart the consultant was wrong.
Instead, I decided to take my little girl to see a private cardiologist, who, without even checking her blood pressure, knew exactly what was wrong with her just from my description of the seizures. He called it “Sleeping Beauty Syndrome”, which we today know as Reflex Anoxic Seizures. As we understand, this condition causes the heart to stop for a few minutes before re-starting itself due to the vasovagal nerve from the heart to the brain being overly sensitive.

It took a further 11 years of testing and monitoring to finally catch a reading of Harmy’s heart activity during these seizures. Two days before her 14th birthday, the ILR (Internal Loop Recorder) device was implanted just above her heart by the electro cardiologist Dr Till at the Royal Brompton’s Children’s Cardiac Unit. This recorded her heart stopping for 24 seconds, which for a RAS patient was very serious. She was then rushed into the Children’s Cardiac Unit to have a pacemaker fitted.

We had hoped this would end the fainting attacks, but sadly this has not been the case, as she suffers from low blood pressure. This has resulted in more collapses requiring ongoing medical care and admissions to The Brompton.