Our journey to establishing 'Keep Track GPS' has been a long, very personal, emotional, and hard-fought process. One we don't wish upon anyone.
However, through the challenges and insight we have gained, we saw there was an opportunity to provide families like ours with options and technology to help them deal with the challenges in their lives and try to live every day to the fullest without fear or anxiety.
We started our family back in 2010 with the arrival of our beautiful boy, Jett. Then, 12 months later, we were expecting another boy and welcomed our Christmas baby Dylan on December 21, 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 travelled away on caravan adventures to the south-west of Western Australia and back to visit Nathan's family in Christchurch, New Zealand.
Our family of four was an absolutely beautiful, tiring, and rewarding unit. Our ambitions were high, and we wanted the world for our kids and our future.
Unfortunately, our family’s life path changed on July 4th, 2012, when our little Dylan (6 months old) had a seizure lasting 25 minutes. We never suspected that Dylan had any medical issues leading up to that day.
He was a funny little guy who was easy going and met 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 in 40,000 children. It is a genetic condition; however, neither parent is a carrier, so it happened in utero.
Over the last six and a half years, our baby Dylan has been on a life-threatening roller coaster. His specialist 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 administer some very powerful anti-convulsive medications and sedatives, induce a coma, and place him on life support.
As parents, it’s the most frightening life to live. We are on constant alert. Hypervigilance has taken over our lives, and we have changed as a result. We look at everything differently, the way we live, what we place importance on, and how we see our future.
Our beautiful, innocent Jett (now 8 years old) is also a victim of Dylan's condition. No, he doesn't have Dravet syndrome, but since the age of two and a half years old, Jett has witnessed the closest thing to watching someone die on a nearly monthly occurrence.
Jett has been left with emotional scares that run deep, which 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 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 lockdown and our children prisoners. That is not a quality of life they deserve, and as parents, it’s not a life we want to live.
Our story is not unique; it’s not a sad story either. In fact, we are absolutely blessed with our two boys and their resilience, character, and love.
Every day 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 device, to ensure Dylan's safety while 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.
As a family we have looked for technology to help us on this journey, when we have wanted to allow carers to watch Dylan and for him to attend the local mainstream school. Or to monitor Jett when he 'takes off'.
We have brought these items for our own personal use and have found they worked. We still use the pendants, and battery tracking units. Our hope is that our journey will help others to find help quickly and effectively.
Don't let fear hold you back from having a fantastic life!