it’s Izla

it’s Izla… & this most beautiful young girl who has the ability to light up any room that she walks into, she can turn anyone’s bad day into one of their best & she oozes a zest for life that is totally & utterly infectious. It’s fair to say if you know Izla already, you know what I’m talking about & if this is the first time you’ve got to meet her, you’re going to be her biggest fan by the end of this story. See, Izla has a magical super power that will make your life so much better… so itsPortAdelaide caught up with Izla’s Mum Kym to find out what makes this incredible human, so incredibly incredible!!



itsPortAdelaide - Hey Kym, so tell us a bit about Izla’s journey from a bub up until now?

“It's been a long one… 9 years, if you break it down it feels like so many more. Her first seizure was at four months old and then from there we knew something was not right & we would go to the hospital for help but we just kept getting sent home. It got to the point that we just sat in emergency & I said we’re not going anywhere until you sort something out. I started googling the internet and of course it came up with a million things. I knew something was not right but didn’t know what, we got Izla into hospital, did some tests & they decided that she had what you call ‘infantile spasms’ which was 200 plus seizures a day. So basically, her brain never got to rest. With that (diagnosis) we were off to a neurologist, in the public system which was a two year wait. Everything I had read suggested that early prevention was the key to get any form of control (over Izla’s condition), so we decided to go private and went and saw a private neurologist who put Izla on medication and sent us on our way. So, I guess the journey started there - it was much a situation where no-one could really give us information - you had to find things out for yourself, there was no booklet, there was no support, so we continued with that. There was no control of Izla’s seizures until she was about 18 months old and we made the decision to put her on steroids which finally provided her with some sort of control over her condition. That was when she started developing, Izla started to walk at 2 & talk at 2 and a half, those things started to happen then, but the downside of all the medication was side effects which were horrible. There was no sleep after no sleep after no sleep, there was weight gain, there was irritability, it was continual agitation… so she was having no seizures, but the side effects were horrible.

The main concern at that time is seizure freedom but (we needed to balance that) with Izla’s development. So basically, I googled & found this place called the Epilepsy Centre and that's where I met with the staff and Nurses (specializing in epilepsy). So, from 18 months to 2 years Izla started developing and at about four years of age when it was time for kindy, we decided to start - this is when seizures came back. Then it was like, okay - the neurologist wanted to try & put meds on top of meds and that's when we made a call and said ‘no’. We decided we could get into the public system to see another Neurologist - we took that journey and it was around then I also found medical cannabis CBD oil. I wanted to try it for Izla because we had tried so many medications & nothing was working apart from the steroids (which was something that couldn’t be used over the long term anyway). So, we went into the public system and they were great, they would run tests and they would give us new ideas. My biggest thing was that I had done so much research on CBD oil & with Izla (idiopathic). Future research may find that Izla’s condition is genetic but now there is no known cause. It could just be her, it could just be her make up - there is nothing that identifies why she has such a syndrome. It’s also not just the epilepsy she has - Izla also has developmental delay and she’s now been diagnosed with Autism. So it's all of those things that make up the syndrome.”



itsPortAdelaide - It must be so challenging for the whole family - dealing with the unknown & trying to find reliable information?

“This is a really interesting thing to say - some people have children who are really quite sick and say most of the time we have a path to follow. But with epilepsy there’s no path - there’s very little information, you must try this to try that. The funding for research isn’t there and it's an interesting illness & syndrome. If someone was to see someone have a seizure it is confronting - very confronting. People don't know how to deal with it and people that have it don't necessarily want people to know about it for that very reason.”



itsPortAdelaide - So, you’re constantly creating awareness for epilepsy?

“Yeah - we do it and it's for Izla, we need her to be accepted and really understood because if you look at her it is an invisible illness, people look at her and say what's wrong with her… well actually there’s quite a bit! So that part of it can be quite difficult for her. She might do something people will look at her & say “that’s really strange”. I'm not going to stand there & put a sign on Izla’s back saying she has this, this and this. Until you speak to her, you won't understand how much she can understand or how much she knows.”



itsPortAdelaide - So one of your drivers is to educate & shine some more light on epilepsy.

“I’m normally a very tolerant person… but one of the things that gets me the most is ignorance… some people are just so ignorant.

One of the things that I’m most scared about is Izla growing up with her Mum and Dad not being able to be there all the time. What does her future look like is the other part of the reason we need people to understand & support her because Mum & Dad won’t be around forever & one day she is going to have to lead an independent life…. it’s frightening, it’s terrifying.”



itsPortAdelaide - To your families credit it seems like you cross every bridge as you get to it?

“We never really get too far ahead because it causes you too much stress & anxiety, “live day by day” is our motto. An example is there was a stage she used to suck her thumb a lot, because of her sensory issues, so she would suck her thumb constantly, up until the age of nine & you would think is, she ever going to stop. People would stare at her because it was her soothing thing then one day she stopped sucking it. It's like Jarrod & I always talk about it’s not if she is going to do something… it’s when. Since she's been seizure free, she’s doing a whole lot of new things that we are just blown away by.

Izla went on new medication last December & she went through, what I would call one of the worst periods of time through December until about April. We were weaning her of off most of the other medication and had put her on the new one and she became very out of body experience, bad behavior, she just had no control, there was no emotional regulation there at all. She would wake at 6 o’clock in the morning & she would scream & smash the house up until 8 o’clock that night…. she could not control her emotions, she was just exhausted by the end of it. Seizures were very few then, but she was having the big ones called Tonic Clonics, where she would shake, convulse as they say. They were taking the toll on her but then by the time we weaned her of most of her epilepsy medication and just on CBD Oil she then started becoming this different child. She was starting to sit longer & was a lot calmer & coping a lot better. Then it just started continuing & continuing & it was like the fog had cleared, it was like her brain had opened up & she was able to learn, understand & see things differently. Izla now understands things in, the words & the language that she is coming out with is nothing that we had heard before.

School was a big indicator of how well she was going, currently she is staying in class & she is engaging with other children her own age… she is progressing so well, she still needs continue progressing, but it’s about what she is currently doing & how far she has come!!”



itsPortAdelaide - Tell us about some of the life lessons Izla is teaching those lucky enough to be around her?

“So many people will say this all the time… she just teaches people how to live in the moment, she teaches people resilience, she lights up a room, she is so happy. She has no judgement on anyone, there is no judgement at all, she will make you smile, she will teach you patience, she will teach you tolerance, she makes you want to stop and look at life from her perspective. There's nothing you can say that’s not nice, there's nothing negative you could say about her. She also teachers’ others about inclusion, she has taught a lot of people it’s ok to be who I am & it’s ok to be around me & it’s ok to be you. On its own epilepsy is not considered a disability, but because Izla has the intellectual disability, sensory processing, autism & attention deficit it’s a syndrome and that's why it is considered a disability. If you ask people that have children or know of people or adults with epilepsy some people are really really strong that it is a disability because if you have a seizure you’re wiped out for the next five hours, you may cognitively forgot a whole lot of things and have no memory at all of the seizure.”



itsPortAdelaide - You are such a strong advocate for epilepsy research, awareness & fund raising tell us what are your drivers?

“I guess the awareness is all because I want Izla to be included & understood and obviously that everything I do branches out to everyone else, of course she is my soul focus but it's about everyone that has to deal with epilepsy. The fund raising part is because I’ve always been someone to give back & when you find out that this could support a place like the Epilepsy Centre where there could be a central location for a lot of people to go, listen and be understood with support. In the world there’s 65 million people with epilepsy!

One of our biggest achievements was the the carousel fundraiser – we attracted over 600 people and raised $20,000. The money we raised produced pamphlets for hospitals in Hospitals, Neurology Departments & Doctors rooms so when you are diagnosed with epilepsy, you receive the pamphlet with a number to call. It was one thing that was lacking when we went through our journey. I never want anyone else to fell the way we did, it was horrible, it was scary, it was so unknown,”



itsPortAdelaide - What are some of the challenges Izla has faced that only those closest to her get to see?

“Her schooling & friendships is one, everybody loves her & she does have friends, but she doesn’t actually have some really, what you would call friends of her own. That would just have her over for a play & I guess maybe a lot of that was historically because of the seizures they were scary, and they were daunting. She has just started to be invite to birthday parties that aren’t family friend’s birthday parties, so it’s that definite whole inclusion friendship thing is a battle… some people do see that, but a lot of people don’t.

The other thing is what she misses out on, she doesn't understand that, but you as a parent see it. Then there’s the melt downs… the sensory meltdown are hard & difficult away from school. In reality for her there are no challenges, some challenges are just for us, she’s unaware of them. She is still very dependent on us to feed her, she tries to dress herself, you know all that personal and social stuff, she doesn’t do it herself, that’s up to us to support here.”



itsPortAdelaide - Tell us about her Dad?

“Jarrod is the man that just stays in the background, he probably was very reluctant of me to do any of this awareness & advocacy because he is so private, so that was a big thing for Jarrod to be so open to the world to what was going on. He was unsure that we should be allowing people to see inside our family as much as we do… there are some things we hold back from, but he has been an amazing Dad. What he does and what he teaches her & the patience he has for her is incredible, she couldn't kick a ball or ride a bike if it wasn't for him, it’s all probably the physical things that he loves to do. He’s the one that doesn’t worry about it as much as I do, let’s say we're going somewhere and she’s doing something that other people will look at her and judge, he gives her that little bit more space than I do, which is a great thing… so I think the balance works okay there. He has been the one that’s worked full time or two jobs whilst I’ve stayed at home doing all the therapy & the early intervention & research, so really I think we are a really good team… we just have to be!!”



itsPortAdelaide - Tell us about her big sister?

“Asha the amazing big sister, look they are typical sisters, they fight & they are crazy. She’s seen way too much for her age, but she's been amazing with Izla. Asha has just recently transitioned to high school we have received such great feedback that’s shown that actually everything she has been through has built the character she is… and it was so positive to get that feedback. There’s a lot of times you think… I’m not getting this right, I'm stuffing it up, Izla is getting so much more attention than Asha, but at the end of the day, you can only do what you can do. Asha is definitely super resilient & very independent, and she is a huge protector & she continues that quality with her friends. What she's been through has built those amazing qualities. Like I said they can fight, but she's dressed her, put pillows under her head when seizing, she helps her with personal care and life things… that's just what we do, that’s life… If you put that into another family, where a small child has to step up, I’m not sure if the same thing is always going to happen. It's about what Asha’s used to & what she’s expected to do & what she will do… so, there's 3 different levels to that. There no poor me, this is it, this is our life & this is how we roll at the end of the day – sure there’s some downs but there’s a whole lot of ups as well, for the first time in our lives, we go out for meals now… we’ve never been able to do that… so there’s lots of positives.”



itsPortAdelaide - Tell us about her Mum? Yep, that’s you Kym!!

“I don’t know how to talk about me… that’s one question I’m not good at!!

I do what I do because I want to, look there's times I’ve screamed and cried and stomped & flapped & sat in a corner but most of the time I am very positive and like to move forward… I’m not good with negativity. As I have said before “Day by Day is our way”.



itsPortAdelaide - Tell us about people close to her?

“She has great family… she has great grandparents… she’s got great aunties, uncles, cousins & great family friends… none of them blink an eye it’s Izla… that is just the way life is. We as a family have some great family friends who are always there for her, no matter what. There are also the support workers at school are beyond amazing, because they are with her a lot & they have been through some awful times with her. They’ve watched her every minute of a school day, they cry when she was seizing so badly, now they just can't stop talking highly enough about how well she is going, they're amazing people in her life. Plus, the whole community, we have a great community around us, there are so many positive people in her life.”



itsPortAdelaide - Tell us about Izla’s Purple Crusade & what are you hopes in the future with it?

“We started off never imagining what we’ve achieved, obvious we done a few different types of fund raisers now & we’ve raised in excess of $150,000. It’s funded some amazing things for the Epilepsy Centre over the years, like information pamphlets for the hospitals, camps, seizure mats and many more. Seizure mats are really important because they allow parents to sleep at night, Izla sleeps with a seizure mat & a baby monitor, so we can hear here all night, so that allows a parent to at least get some sort of a sleep knowing that their child is safe…they are really important in the world of epilepsy. It helps you easy your mind by being alerted. Some years we are very strong in terms of how much we do with our fundraising, depending on how we are travelling as a family. Either way there’s always awareness & advocacy happening, through social media or talks at groups that I go and visit or if it’s just a morning tea or movie night, there’s always something happening.

We’ve got the Purple Day Morning Tea fundraiser coming up on the 26th of March at Mr Pilgrim Cafe - Semaphore, starting at 9am because this month it is Epilepsy awareness month & Purple Day. It’s nice to see that sometimes it creeps out of the community to the wider community a we have all sorts of areas come down & join in with the morning tea. Every year there seems to be more & more people that want to get on board which is awesome. One of the most amazing things we like to see is when we are somewhere random & we’ll see someone with an Izla’s Purple Crusade hat or t-shirt on… we love it … we just love it… it’s certainly a conversation starter that’s for sure!!”



itsPortAdelaide - What are some of the misconceptions associated with epilepsy?

“It’s basically you are not normal & what is normal… if someone could define that, that would be great!! We have heard that a lot over the years. Also, that not all epilepsy is on the ground shaking, lots of people do relate it to that, there are a number of forms of epilepsy. Know your first aid so you can help somebody if need be.

Also, that you’re still able to do things. In sport there are soccer & football & cricket players that play with epilepsy, there are professionals that have epilepsy, there are people succeeding in life with epilepsy & unfortunately there are a lot of people that aren’t controlled & it does effect there life in a really bad way. There are also people that are controlled & they take one tablet a day & they don’t have a seizure, there’s misconceptions, there’s misunderstandings there’s misinformation, there’s just so much people don’t understand about it…. & I guess that’s why we do what we do.”



itsPortAdelaide - Is there one time that stands out to you that you were super proud of Izla?  

“There’s so many things with Izla that I don’t think I could say just one specific time that stands out to me the most. If you were to read the text books of what she has with ‘West Syndrome’ she wasn’t supposed to walk she wasn’t supposed to talk, she shouldn’t be where she is, so I guess there has never been one proudest moment because there are so many proud moments were she continues to tackle & achieve by just being her.”



itsPortAdelaide - What message would you like to leave everyone reading you families story?

“Be kind (that’s my favorite saying.) It’s all those sayings… don’t judge a book by its cover, you don’t know what someone is dealing with until you’ve walked a mile in their shoes. Maybe see things from someone else’s perspective & try to understand what they are going through. Sometime if you have epilepsy it’s not just the seizure, like with Izla, there’s more to it, she might not sit still & she might try to hug you a million times, there’s nothing unkind about it. I guess I’d ask for a little more patience & tolerance to understand & that goes to everything in life, doesn’t it? The slogan that goes with Izla is ‘turning I can’t, into I can’ because there’s so much that people think she can’t do but she shows them all that she can.”

We got to give the last word to Izla… “I love to dance. I’m happy with my friends & family. I love watching planes, going on the carousel & I love to kick the footy!!”

We’ve created a pretty cool community here at itsPortAdelaide of liked minded champions (that’s you) that rally together to help one of our own out. So, for the first time ever… I’m asking you a favor… actually 3 favors. Please do it, it would mean a lot to me!!!

1. Please like, comment & share this post… to spread the word. After all its epilepsy awareness month.

2. Click this link Izla's Purple Crusade Facebook page & like the page… & while you are there ask you friends to like it too.

3. Kym has invited you all to Purple Day Morning Tea on the 26th of March, so if ya free that morning please come down to Mr Pilgram Cafe, Semaphore from 9am to support such a worthy cause. All the details at Izla’s Purple Crusade facebook page. We’d love to see ya there.

Thanks heaps to Kym, Jarrod, Asha & Izla for sharing their story!!!