Thank you for taking the time out of your busy lives to sit down, and pause for a moment to read this.
What you read, may make you think, or just make you go and hug you child or loved one. Or, (and this is what we hope) it may make you enrol in a first aid course to learn first aid skills which may save a total stranger. That stranger could potentially be a child/adult who suffers Epilepsy, it could even be our son Ben.
You see our son Ben, like many other kids/adults who suffer Epilepsy, is just like any other kid or adult. He is a happy little boy who wants to have fun, play with his friends and do what everyone else does. Ben has developed a love for super heros that is heavily encouraged by his uncles (in the day of marvel, what boy hasn't?). Ben had his first tonic-clonic seizure at 22 months of age in 2013 (Ben is now 7) on the floor of my mother-in-law's kitchen. God Bless her she was an absolute rock when it happened, she stayed calm and used her first aid training that she had received at work (the expensive tab of red wines afterwards was definitely worth it haha), had it been me, I wouldn't have know what to do as I didn't know anything about Epilepsy (boy o boy was I about to learn really fast). The longest seizure Ben has suffered since then was 18 minutes of shaking. I tell you, seeing your child have a seizure for 18 minutes, as a parent, you would give anything to trade places.  Seeing their eyes rolled back, shaking uncontrollably, the unknown pain they are going through, and, not to mention the damage that is being caused to their brain. However the side effects from this seizure usually last for hours to days, and affect everyone around them. With Ben, he may loose the ability to do something as simple as hopping, which is something every 7 year old should be able to do.

We have taught Ben that he is a superhero, because every superhero has a struggle they must face, and one thing that makes them special. In Ben's case, his struggle is his seizures, his strength is that he is a boy that lights up the light of everyone he meets, as well as facing ever challenge he is asked to.

Like super heros, seizures come in all sorts of different types, and styles. You get your tonic-clonic, where your whole body may shake, we call these shake-shakes for Ben. Then you get your Absent seizures where they just blank out for no apparent reasons. These are the ones Ben is suffering at the moment and they can happen to Ben in the blink of an eye. Just like today, the only side effects he can get are loss of speech of incoherent speech and eyes not tracking properly / together. The scary thing with this is you blink you miss them.  The two I have mentioned here are just the two we believe Ben suffers from we and the specialists could be wrong. Wow the specialists where to begin. Ben has Ben poked, prodded, asked questions about how he is feeling, can he draw this do, do that, and has had so many leads connected to him for EEG's and MRI's that he has looked like a robot. He has become so used to going to PMH (Princess Margaret Hospital) the old children's hospital in W.A. They have now opened the Perth Children's Hospital finally, yay for anyone living in Perth, you will know how long winded the opening has been.  It is truly a remarkable place and with all the new equipment in there hopefully they may be able to work out the cause of Ben's seizures finally as they have never been able to work out what started them.

Having a seizure makes everyone around you stop and freeze, the problem is you need one of the of the frozen people to step forward and say "it's ok they are having a seizure I'm first aid trained / or i know what to do, can you standing there texting on your phone please stop texting and call an ambulance".  Someone needs to stand up, take control of the situation and potentially save our son or someone else's loved one.

There are so many different types of Epilepsy that we could go on for ages and ages listing but we won't do that now. If you want to find out more information check out the Epilepsy Association of WA at www.epilepsywa.asn.au, they have amazing volunteer staff who are always willing able to help you. You can also become a member for a very low annual fee, which I highly recommend if you have an Epileptic child, family member or someone you care about.

As I'm sure most Epileptic parents who are reading this are about to shake there heads yes when I say delays because of Epilepsy and needing to have fantastic therapy teams in place. Not once does Ben complain about the fact that we have to go to Speech Therapy, Occupational therapy (http://tlc-wa.com.au), Physio Therapy  (http://www.letsgophysio.com.au) every fortnight. We have been doing this for the last 18 months plus with only missing the occasional one. The absolute commitment that Ben has given has been nothing short of 100 percent along with the amazing team of therapist and support staff leave us speechless. To see the progress that he has made from where he was 18 months ago makes it all worthwhile. We would be truly lost without you wonderful ladies.

On top of Ben's Epilepsy he also suffers from Global Developmental Delay which means he is well behind his peers in schooling.  Generalized Anxiety Disorder which means that he becomes upset and emotional even in the simplest of settings. Lordosis of the spine so he has to wear a special Thera- Tog suit which we place on him in the mornings and remove at night time.  His Lordosis is so bad that it is normally only seen in children with Cerebal Palsy but he does not have it.  He is currently undergoing Autism and Genetic testing to try and find a cause for all of unique Super Hero problems

**Update** The genetic has come and shows that Ben has a rare genetic disorder called 22q11.21 duplication sydrome.  There is no magic pill, it is a life long condition and the only treatment is ongoing therapy and managment.  We are lucky we have such a strong therapy, specialist and villages around.

Probably one of the most unique and I must admit beneficial members to our therapy team was a very unique pair, theirs names were Pip and Stardust. To Ben, Pip and Stardust mean the absolute world, they saw each other usually every single week. If for some reason Ben is not able to see Pip and Stardust all hell would usually break loose. Who is Pip and Stardust you ask? Pip was Ben's equine therapist and Stardust is her, no other words can describe her apart from, an "amazing horse 🐴 with beautiful healing properties". It is truly amazing to see a 23kg boy leading and instruct a 600kg plus horse what to do. The truly amazing and special connection Ben and Stardust have had in such a short time, is something we are all left speechless with. I would truly recommend Pip and Stardust to anyone looking for an Equine therapist. We are truly grateful that they came into our life, purely by chance at the time they did, and they became an integral part of Ben's therapy team and practically family also. In a true loss to Western Australia, however, Pip and Stardust have moved over to Queensland, to spread their magic on a larger scale, so if anyone over that side of Australia is looking for someone amazing, Pip can be contacted through Facebook on: Peace & Equestrian

As a a parent how the hell do you protect against this?

You can't!! That is what scares the living daylights out of us. There is no product on the market today that can save the live of an Epileptic who has Absent Seizures. More people die from SUDEP (Sudden Unexplained Death in Epilepsy Patients) than in house 🔥.
How often do you hear on the news that someone has passed away in a house 🔥?

When was the last time you heard some passed away from SUDEP?

The only thing that will help Ben have the full life where he can do what any growing boy wants to do, the freedom to go to his friend's house by himself, is an medic alert/seizure dog. These dogs are highly trained, which takes approximately 2 years.

Unfortunately there is no organisation based in W.A. which provides such dogs. Which is ridiculous as there are currently 26,000 epileptics in W.A. Alone. More people suffer from Epilepsy than Blindness, Motor Neurone Disease, Muscular Dystrophy and MS combined. We would have to fly a dog and trainer over from the eastern states, if we are lucky enough to be accepted into a program. The cost for someone living on the east coast for one is these dogs is approximately $30,000 over two years of training alone, so our costs will be higher than this. There is evidence from studies and use in America, that one of these dogs should, once bonded with their handlers (the seizure sufferer), minimize the risk to the handler of a seizure through ensuring their safety, as well as carrying the appropriate emergency medication and information.

Now for the bad news, we want to get this dog for our son, but, in 2014, I (Ian, Ben's dad) had two strokes, developed Chronic Fatigue Syndrome, and, lost 57% of my vision. I now have the day to day struggle of chronic body pain and chronic migraines, which means, I just cannot work. I have trouble focussing on doing the washing and vacuuming the floors on the same day, let alone what is required when you are working. The silver lining (because my wife says there is always a positive), I can take Ben to all of his therapy appointments (thankyou to google calendar and all of the reminders in my phone), which means my wife is able to work full time as a nurse, and study part-time to be a primary school teacher (she is nuts right?).

All we would ask is that perhaps instead of going out to have your coffee for the weekend, stay at home with your family, donate to the go fund me page listed below, donate the cost of the ☕️ and most important, hug you child or the person you love. Because, if we have learnt nothing else, you never know what might be around the corner, so live life to the fullest, and enjoy every minute with your loved ones.

 Let's start spreading the news that Epilepsy is nothing to be afraid and that one day you may meet Ben (and hopefully his doggy friend)!
Even if you sign up to a first aid course after reading this, you may save a life. It might be Ben's (we hope you wouldn't have to), it may even be a member of your family that you save, as 1 in 10 people will suffer a seizure, at least once in their life!

Please share this far and wide.


Link to Ben's gofundme page

Thanks from Ben and his loving parents

Ian and Jodi

********** Update ********************

Ben’s blog 19/02/19

Hiya, this is Ben’s mum.

I thought I would have a go at writing this week and giving you some updates…

Hope you are having a great week, I am recovering from night shift, and preparing for uni to start next week.

Life has been crazy as usual, Ben has been having seizures still, on the plus side he can now take tablets which will make travelling with medications much easier than with the glass bottle we used to have to carry.

Radar has been born and is now about 4 weeks old. He will be a chocolate coloured male Labrador, we just have to wait until about six weeks when his personality shows itself so that we can get the cheekiest little boy pup who is also very food driven, apparently this will be the perfect combination for Ben.

Thank you to Valinka Labradors for understanding what we needed from a puppy and being very patient with our many requests. When Radar is 8 weeks old, he will then go to his lovely trainer to start his education in his very important job as Ben’s best friend, companion and ‘seizure radar’.

Kay from Wagamuffins will have Radar for a  few months, then after this he will start coming to stay with us and begin learning about where we go as a family. We can’t wait for what March will bring, not only Radar, but also the Epilepsy WA walk for Epilepsy on 24^th March which promises to be lots of fun where we try to wear as much purple as humanly possible. This is also a great experience because you see the spectrum of the population that Epilepsy affects and that you can still live your life, achieve your dreams, and as Ben shows, be happy while you are doing it.

It is not until you look at your life that you realise how much Epilepsy not only affects the sufferer but also their family and community. We are extremely grateful for the support we have from our village – those people related by blood, marriage, and by the desire to give a little boy the best chance at life that he can possibly have. Every day when I wake up to this cute little man, sorry ‘handsome’ man as he likes to be called, I am ever so grateful that he comes to wake me up. It might be before the alarm goes off, but to be honest I would willingly get up just to have him snuggle up to me on the couch and appreciate these times.