Our journey to creating 'Keep Track GPS' has been a long, personal, emotional and learnt process. One we don't wish upon anyone, however through our challenges and what insight we have gained, we realized there was a need to provide to families like ours, options and technology to help them deal with the challenges in their life and try to live everyday to the fullest without fear or anxiety.
We started our family back in 2010 with the arrival of our beautiful boy Jett, only 12 months later we found out we were expecting another boy and welcomed our Christmas baby Dylan on the 21st December 2011.
Life was fantastic, Nathan was working FIFO from Perth to the Pilbara and Rayleen had returned to work in her career as a Human Resources Specialist part time. Travel was a passion we all loved and prior to returning to work after maternity leave the family traveled away on Caravan adventure to the Southwest of Western Australia and back to visit Nathan's family in Christchurch, New Zealand.
Our family of four was absolutely a beautiful, tiring and rewarding unit. Our ambitions were high and we wanted the world for our kids and our future.
Unfortunately our families life path changed on the 4th July 2012, when our little Dylan (6 months old) had a seizure lasting 25 mins. Never had we suspected that Dylan had any medical issues leading up to that day. He was a funny little guy who was easy going and meeting all his milestones. Dylan was diagnosed with a life limiting, catastrophic form of Epilepsy called Dravet Syndrome. It is resistant to drugs, very hard to control and only effects 1:40,000 children. It is a genetic condition neither parents are carriers so it happened in utero.
Over the last 4 years our baby Dylan has been on a life threatening roller coaster, his specialist actually told us 'Dylan has tried to die on us too many times'. Dylan's seizure can attack him at anytime, anywhere and without warning. For our boy, his seizures are hour long events, the longest going for 11 hours. The only way to stop them and help keep Dylan safe and alive is to induce a coma and place him on life support.
As parents its the most frightening life to live, we are on constant alert. Hyper vigilance has taken over our life and we have changed everything about the way we live, what we place importance on and how we see our future.
Our beautiful innocent Jett is also a victim of Dylan's condition. No, he doesn't have Dravet Syndrome but since the age of two and half years old Jett has witnessed the closest thing to watching someone nearly die.
Jett has been left with emotional scares that run deep and we truly don't have a grasp of at present. He has been diagnosed with Post Traumatic Stress Disorder, Anxiety, Stress Depression and ADHD.
We have watched our little Jett withdraw from life at times, other times we are dealing with a child who has no idea how to manage his emotions so will seek danger in an altered state of mind. When Dylan had a seizure at the beach, Jett went into a panic hours later. He jumped onto our roof at 3 years of age and ran recklessly around it until Nathan could catch him. We have tried everything to help him and will continue to, however life goes on and we can,'t keep our house in lock-down and our children prisoners. That is not a quality of life they deserve and as parents its not a life we want to live.
Our story is not unique, its not a sad story either. In fact we are absolutely blessed with our two boys and their resilience, characters and love. .
Everyday is a blessing and after years of coming to terms with our path as a family we have chosen to live life and live it to the fullest. We are prepared at all times, with every available medicine and portable medical devices to ensure Dylan's safety whilst we wait for help. Our journey is crazy and terrifying at times but as parents and individuals our children have made us the people we are now
Or to monitor Jett when he 'takes off'. We have brought these items for our own personal use and have found they worked.
Our hope is that our journey will help others to find help quickly and effectively.
Don't let fear hold you back from having an fantastic life!
Thank you for reading our story
Nathan, Rayleen, Jett and Dylan Thorne