In the words of their mum Nikki:
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 coming back negative, GPs and consultants who saw her continued to say that this is 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 it, this is a condition which 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’s activity during these seizures. Two days before her 14th birthday the ILR (Internal Loop Recorder) device which had been implanted just above her heart by the electrocardiologist Dr Till at the Royal Brompton’s Children’s Cardiac Unit, 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 bring an the end to the fainting attacks, but sadly this has not been the case as she has low blood pressure, and also the lead of her pacemaker has become displaced. This has resulted in more collapses requiring medical care and admissions to the Brompton.
However despite all these problems with her heart condition, which is now know as VVS (Vasovagal Syncope) because her heart stopped for so long and the condition has continued into her late teenage years, Harmy still manages to lead an active life, never letting her health hold her back. She was promoted to a CCF (Combined Cadet Force) Corporal and awarded a Leadership Shield for mentoring younger cadets, and was selected to carry an Olympic Torch in 2012. She passed 13 GCSE exams with A* – C grades and managed to get into the 2nd best girls’ grammar school 6th form in the country. She has high expectations for herself and is looking to work for the United Nations later on this year with her first trip being to Geneva.
In 2011 Harmy’s sister Jessica, who is now 10 years old, was also diagnosed with a serious heart condition. It is called SVT (Supraventricular Tachycardia) for which Jessica is on a twice-daily course of heart medication. It has made Harmy even more determined to live her life to the full and achieve all her goals even more. She wants to show not only her sister but all cardiac children that life is so much more precious when living with a heart condition.
None of this would be possible without the expert care and medical support from the Royal Brompton Hospital Children’s Cardiac Unit’s specialist cardiologists and nurses. They saved both sisters’ lives for which I will be forever thankful. For a cardiac patient every second counts, just like every penny counts towards providing that expert care and support at the Royal Brompton Children’s Unit.