Kayla Haidley

I’m taking part in Walk for Epilepsy around Australia because...

I am raising awareness and money for those living with epilepsy, like my son Hamish. 

Hamish is everything an almost 5yr old little boy is. He absolutely loves spending time with his family, going on adventures, riding his bike, playing with his big sister and his cousins, he loves fishing, caring for animals, going to the beach, and doing anything he possible can outdoors.

 Hamish also lives with a rare Childhood Epilepsy Syndrome - Epilepsy with Myoclonic Atonic Seizure (EMAS) or more commonly known as Doose Syndrome. And is the bravest little soul I know!

At the end of last year Hamish was also diagnosed by his Neurologist at QCH with Refractory Epilepsy - which means that his epilepsy syndrome is classed as Drug-Resistant. This is because Hamish has tried 4 different Anti-Epileptic Drugs (AED's) to control his seizures and they have all failed. Even with switching to a Modified Ketogenic Diet -in January this year- to help Hamish gain seizure control and hopes to wean him off the 3 different AED's he was on; We only got to 6months into the diet and weaned him off one medication before Hamish went through drastic behaviour changes which impacted his everyday life immensely and then his seizures began to breakthrough again. 

Just in early this month (September) Hamish went into a Non-Convulsive Statis Epilepticus essentially Hamish went into an Absence seizure that lasted just over 30min. His longest seizure to date. 

It has almost been 3yrs since Hamish first seizure. During these past 3 years Hamish's longest time he has gone without a seizure was only 6months (which was this year using the Keto Diet and 3 AED's on board) The impact that this has had on Hamish development and overall childhood is now really starting to show. 

We are currently left with a cloud of uncertainty now on how he will cope and intergrade into the Mainstream School environment next year when he starts Prep.  As a mum I am very glad that Epilepsy Queensland can help and assists with this transition.  And that I have somewhere to turn to and seek help with anything epilepsy related. 

There are many reasons why I am so passionate about the Walk for Epilepsy and why I am so passionate to help make a difference, raise awareness and support people living with epilepsy.  Because I have unfortunately had to watch my son from such a young and small age of 2yrs old live everyday with this medical condition. Yes, his seizures are a big part of his journey, although they really are only just the tip of the iceberg for someone living with Epilepsy. And there's so much more that can be done! 

Hamish is just one of many children and adults on this journey and we are not the only family having to witness and support a loved one with Epilepsy. 1 in 25 people live with epilepsy, which is a crazy statistic! Everyone's Epilepsy journey is SO different! And they should never have to walk it alone. 

Please help me by giving whatever you can using the 'Donate' button or join my team, create your own, which ever you can do, just do it! The more people that know about the walk, the greater the impact, so please also spread the word by sharing our page on social media, or even Hamish's Story with your friends and family! Thanking you kindly in advance for your generosity, it really means a lot! XOXO

Let's All Stand UP and Walk for those living with Epilepsy! #1in25