The little battler

Written by Kerrie Alexander

Whether you call them clangers, clunkers, rust buckets or simply just dungas … hundreds of Fraser Coast residents get behind the wheel of their beloved rattly rally cars every year for one exceptionally good reason!

The Dunga Derby is run every year to support local families and individuals with life-limiting medical conditions or those who need help from a situation beyond their control.

Under the umbrella of the Rally for a Cause charity, those Dunga Derby teams have raised a a massive $1.8 million since its inception in 2015.

That money has since provided support to over 100 local Fraser Coast families in their times of crisis.

Each month, Alive Magazine will publish a Dunga Derby column with a focus on the families who have been recipients of this vital support.

Those who have thrown a dollar in a dunga tin, attended events or even sponsored a car, will read about the incredible difference those life-changing donations have made to the recipients.

Below is a story from Michelle and Matt Hourigan who are the parents of little Kaysey.

The family’s lives were turned upside down when Kaysey started having rare seizures at just one years old.

Rally for a Cause has been supporting the family with funding towards Kaysey’s physical therapy sessions to help build his gross motor skills and his strength.

Kaysey’s Story

Kaysey was born in Bundaberg on January 14, 2014. He is my fourth child and Matts first.

When he was born, he arrived via emergency c-section as the cord was wrapped across his head.
If I had given birth naturally it would have killed him. Because of all this (and that I had a Placental Abruption) he was born dead on arrival. Thankfully, they managed to bring him back. He was also born with a club right foot, and he had to wear a splint on from the age of three months to 10 months old.

We moved to Lithgow NSW just before Kaysey turned one. The day after we arrived is when our world was turned upside down.

We were eating lunch when Kaysey went all limp. At first, we thought he was choking but a minute later he seemed fine. He then slept for around four hours which was unusual for him, and I had to wake him for dinner.

At dinner he again had this funny little turn, which seemed like he was choking.

I recall saying to Matt that ‘I don’t like this I think something is wrong and if he does it again, I’m going to the hospital’. As soon as I said that he did it again, so it was a total of three turns in one day.
He went to hospital and was admitted straight away. During the three-hour stay he had another four turns. This was enough for them to transfer him to Westmead Hospital in Sydney.

He had another turn in the ambulance. At this stage we knew he was having some sort of seizure but unsure of why or what sort. There was no temperature or any signs of sickness at all but when he had a turn his oxygen level would drop dramatically; the lowest we recorded was 35 and his lips would go blue.

I stayed at Westmead with him for one whole week. This week, it was his first birthday, so all the nurses and neurologist all came and helped celebrate with cake, balloons and clowns. The same week we were there he didn’t have another seizure and test after test was done with no result. We were sent back home to Lithgow.

We were home maybe two days and he started seizing again. So back to Westmead we went for further testing. They decided to give him an EEG to see if it was epilepsy, but they said no at first because there was no brain scarring from his seizures. In the first month we were in and out of Westmead and Katoomba Hospitals and we were not getting any sort of real answers. He had numerous EEGs, he had a heart harness on for 48 hours to see if it was caused from some sort of heart issue, he had MRIs, spinal fluid taken, an EEG that he had to stay in his bed for three continual days, it went on and on and again with no real answers.

Every time we were sent home, within a day or two we were back in hospital. It only seemed to happen when we went back to Lithgow. The longest we were home for was 19 days. It was so hard to be hours away from Matt and family all the time.

After what seemed like the 100th time we were admitted and after numerous tests and bloods and so forth, we still did not have any concrete results.

The head neurologist was in California for a medical conference, and he bought up Kaysey’s case with the American neurologists at the conference.

It was discussed as to whether it was epilepsy or not as there is normally brain scarring or tissue damage from seizures.

They came to the conclusion that it was a rare form of epilepsy due to the nonscarring and that he was suffering from Focal/absent seizures.

The longest seizure he had was 4 minutes 30 seconds – at 5 minutes you are brain dead! He had one in the bath where he went from having so much fun to being dragged out and comforted on the floor.
Every time he seized we had to call the ambulance and have him put straight onto oxygen. We just felt so helpless as we couldn’t do anything for him while he was fitting … we just held his hand and spoke to him telling him it is ok.

From there he was put onto anti-seizure medication, Keppra, to which he became a very violent 1 year old.

So immediately they changed the medication to Tegretol and he was on that for 2 ½ years. With that he became a zombie and in turn it stopped his development in its tracks.

After living in Lithgow for four months, in which he was in hospital for 3 of those, we decided to move back to Hervey Bay.

From the minute we got back he has been seizure free and remains seizure free to this day. He then had to start with speech and OT sessions weekly as he was very behind developmentally.

Basically, at the age of 4 he was more like a one-year-old. He still has some areas where I have to help him such as toileting, using a knife and fork, pouring drinks etc.

We have had a long and stressful road to get him to where he is now.

His speech has flourished in this time, but his fine and gross motor skills are still lacking.
He is still doing OT now. He can’t put on weight and is approximately 8-9kgs under the average weight for his age group.

He is now in Grade 2 where he is one of the highest in his grade for reading but is below for all other subjects and is struggling at the moment.

He still sees a paediatrician and they are now testing to see if he is on the spectrum for Autism, which I have been told that it is a very high chance he is.

But we will deal with that as we have for the last 6 years, one day at a time. He has also been diagnosed with ADHD which he is on medication for.

He is going on 6 year’s seizure-free and although that is fantastic in itself, the damage has been done and we are now on the long road to repair all that.

Rally for a Cause and the Dunga Derby has kindly helped with funding towards Kaysey’s physical therapy sessions to help build his gross motor skills and his strength, and he is loving it!

He has gone up a level in both areas and I’m amazed at how quickly he has adapted and progressed with it.

He is now 7 years old and maybe only one year behind the average seven-year-old, but he is a little battler, and he just tries his best all the time.

Every day he has surprised us with another big word he has learnt, and he likes to show off his “guns” as he calls them, after using the 1kg weights for two minutes.

He still struggles with a lot of everyday stuff, but he just takes it in his stride and carries on. He’s just a little trouper.

We would like to say a massive thank you to the Dunga Derby and Rally for a Cause for helping Kaysey.

It will help him in so many ways and not just physically but mentally as well.