AVC THE LABEL

By Bec BARRY

Why I’m supporting the heart foundation

It was a normal night in September, when suddenly my life changed forever..

 

September 14 2020 started out like any other day, it was lockdown so I was home with the kids and Andrew was still working as he was a supervisor for GJ Gardner so was classed as essential.

 

We all got up and had breakfast together as we always did. As the kids got ready to start their online learning with school Andrew was getting ready to head off to work. He gave us all a kiss and a hug and said goodbyes with ‘ I love you’ from the kids as he headed out the door. 

 

The day was just a standard day in lockdown, kids finished their homeschooling and we playing outside in the sun. Andrew would always text and call during the day, this wasnt uncommon. He called and said he would be home at 4pm and at this stage we were completing our gym workouts online as gyms were closed. So he called and said set up the gym and we will do a workout when I get home. 

 

So this was around 2:30 that he called so I set up the routine around 3:30pm. He got home at 4, gave the kids and I a kiss and a cuddle, had a chat with the kids then went and got changed into his gym gear. 

We went out and did a 45 minute session, he said it was a good session and felt good for doing it. 

We came inside and the kids were all over Andrew so he went and jumped on the tramp with Taj our son who was 10 at the time, then came inside and played with Zali our daughter who was 7 at the time. 

During lockdowns he would come home and just take the kids to give me a break, so I would cook dinner to have a bit of time out. 

 

We ate dinner together, he cleaned up and then got the kids ready for a bath/shower. Once the kids were in bed we had a nightly routine where we would have a cup of tea and some chocolate and chat about our day and just anything in general, I always had to take the chocolate away from him as he had the biggest sweet tooth!! We sat up and paid bills together before getting ready to go to bed. I headed off for a shower and he would always come in and chat and I would do the same when he was in the shower.

 

After showers we were just chatting and I had my back to him and said something to him but there was no reply, I turned around to see all the colour start to drain from his face and he turned grey very quickly. He started to collapse so I had to help him down and I laid him on the floor so he didnt hit his head on anything.

I thought he had fainted as he had fainted only a month before so I was tapping him on the face saying come on, wake up Andrew’ and getting the face washer to put on his forehead which is what I did last time, and last time he was only out for 30 seconds max but this time it was different, he looked different.

I noticed he was barely breathing and his pulse was really light, and his eyes were open but glazed. I went into shock and panic, I could barely speak.

 

I remember scrambling for my phone and called our friend who lived around the corner and he was there in a split second and on the phone with the ambulance. She asked him questions about his breathing and pulse and then instructed him to start performing CPR until the paramedics got there.

I ran down to the kids because I wanted to make sure they stayed asleep, so closed their doors and all the doors to the front of the house. Our kids are very light sleepers so I was expecting to see them, but long story short, they slept through the whole night. I know he was helping them to stay asleep that night. 

 

Paramedics arrived fairly quickly and they moved him from our room to the room across from ours which is the study because there was more room in there for everyone. I had to wait outside and they would come out and tell me what was going on and why they were not taking him to hospital and the reason was, is because they were giving him everything they would at hospital so wanted to keep him comfortable.

 

 

 

They worked on him for I think an hour and came out to me and said his not responding to anything we are giving to him what do you want us to do and I said you have to keep trying, so he went back in and kept going.

 

I have the sound on that flatline machine embedded into my brain because I could hear it every time they tried to jump start his heart and it would just go beeeeeeeep. He came out again after about 25 minutes and looked at me and said Im so sorry Bec but his passed away.

Those 3 words, his passed away, are not what you ever think you will hear about your 35 year old husband, he was days shy of his 36th birthday. How could someone so young, fit and healthy just die like that? 

 

I remember after he told me, my legs just crumbled from underneath me and I collapsed on the ground with my parents around me, just uncontrollably crying and screaming what the actual f**kthis cant be happening, this is all a dreamsomeone wake me up PLEASE.

I managed to walk in to where he was to just sit with him and I cried and cried and cried. I talked to him, I looked at him, I hugged him and just laid there next to him for as long as I possibly could. 

 

I had many questions fired at me after this and the only one I do remember is would you like an autopsy completed?’ My answer was YES, flat out yes, I needed to know why, how, what was it that took his life.

After this answer the coroners van came to collect him, he was placed in a van and taken away, I will never forget those images of watching 2 people I didnt know wheel my dead husband into a van and take him away.

 

It was well after 1am once this had all unfolded, once all the paramedics and police had left, I went inside with my mum and dad and just sat on the couch. I then had the hardest thing I have ever had to do was tell our children that their dad died. How do you tell 2 kids that went to sleep with kisses and cuddles from their dad to then wake up and never see him again. I didnt wake them, I wanted them to sleep. So I just sat there the whole 6-7 hours and just stared at the door to the hallway where their rooms are thinking what and how am I going to do this. 

 

What felt like a lifetime of waiting for the autopsy results to come back they finally arrived and his cause of death was Arrythmogenic Ventricular Cardiomyopathy, more commonly known as AVC. AVC is a heart disease, a rare heart disease. It causes a problem with the proteins that hold heart muscle cells together. It causes these cells to be lost and replaced by fibrous scar tissue and fatty cells, causing the ventricle walls to become thin. This can cause 1 of 2 problems - the electrical pathways through the heart that coordinate the heart beat may be affected, causing arrhythmias; and the thin walls of the ventricles of the heart are unable to pump blood as effectively as normal.

 

So what the specialists believe is that Andrews heart beated so fast that he couldnt actually feel it and that resulted in SCD - sudden cardiac death.

 

Andrew didnt know that he had this rare disease in which they call a silent killer, because it has no real’ symptoms other than fainting, dizziness and fatigue. After he had his first fainting episode we went to the doctors and he had all the relevant testing done, ECG, Holter Monitor, Stress test and EEG. He aced all these tests and his heart was doing everything that it was meant to be doing, the only other test he could have had was a ultrasound on his heart which would have shown that he had AVC but because he passed all the other tests doctors said he didnt need the ultrasound.

Andrews older brother Dale has AVC. His was detected before it took Andrews life. Dales heart rate was so high that when he drove himself to the hospital doctors were shocked he was still alive, so he now lives with a defibrillator in his chest to keep him alive.

 

They say AVC can be genetic, do Dales blood and also Andrews blood has now been tested however there is no direct genetic link, I wasnt happy with this and I asked so is it genetic?

The specialist said we think it is however there is just not enough information on this disease to find that out at the moment. As you can imagine this didnt sit well with me, Dale has 3 children and I have 2 who all now have a 50% chance of having this disease. They all have to have regular screening and once 18 they will be having MRIs as well, but with the screening Andrew had this too and it all came back fine, so to me something had to be done.

 

Andrew and I had always wanted to create a clothing label, own our own business. So once everything had settled a little I wanted to do something to take my mind off my own grief and do something for the heart foundation.

 

This is where AVC The Label comes in. I have created AVC The Label in honour of Andrew to keep his legacy alive and to raise much needed funds to get more information on this horrible heart disease and to also aid in finding cures for heart conditions like AVC. 

10% of all sales from my apparel will go towards the heart foundation Australia.

I have hoodies, tees, caps, wrist bands etc all for men, women and children.

 

We will be having fundraising activities coming up and we are involved in the My Marathon with Heart Foundation Australia in October which we are so very excited about.

 

So please head over and follow my pages on socials and keep up to date on AVC The Label and what we are up to in the community to raise funds for this silent killer that took my husband and the father to our children. 

 

In September 2020 my husband Andrew suddenly and very unexpectedly passed away right before me at the age of 35. He left behind myself and his 2 young children ages 10 & 7.
After an autopsy was completed it came back with a rare heart condition called AVC - Arrythmogenic Ventricular Cardiomyopathy.

As there is not a lot of information out there or funding for testing and genetic testing for AVC. 
I have created a label in honour of Andrew called AVC THE LABEL and I donate 10% of all my sales to the Heart Foundation in hope that one day we will be able to find a cure for this disease. 

Event Information

Saturday 07th August

Thank you to my Sponsors

$1.24k

Central Victorian Chrylser Club

$1.2k

Avc The Label

$760

Bec Barry

$415

Bec Barry

$104.40

Swan Hill Curtains And Blinds

You are an amazing young woman Bec anything we can do to help please let us know. Looking forward to checking out your online shop might just purchase something.

$104.40

Brenton Miller

$52.20

Cass Hall

$52.20

Nadia Stewart

My condolences to you, Bec and family. Thank you for sharing your story and bringing such awareness in your grief. Stay strong, you are doing great!

$52.20

Anonymous

Thank you Bec Nic x

$41.76

Viki Maconochie

$41.76

Anonymous

I am so sorry for your family’s loss. Stay strong❤️

$20.88

Sarah Ogeimi

What a true inspiration 💙

$20.88

Melinda Keighran

You are doing an amazing job creating awareness and honoring Andrew’s memory

$20.88

Romy Norbart

$10.44

Katrina Paino

$10.44

Michelle Warren

Wishing you all the best Bec, I lost my husband to a heart attack at 33 and I also had two Young children it was devastating. Now 20 years on to see your story was heartbreaking 💔 but I can see you are a strong and determent young lady just like I was sending you love and strength x

$5.22

Anonymous