Tyler's Story...

Tyler James Flaskas

10/08/2015 - 29/07/2018

Loved Son of Abbey-Lee Mason & James Flaskas

On 10 August 2015 our beautiful boy Tyler James Flaskas entered the world; a normal healthy baby boy.  He was pure perfection. We had no idea though that our perfect world would be torn apart.

Despite concerns of reaching milestones and regression, Tyler lived a normal life until 2 November 2016 when he was 14 months I had a Mum instinct to take him to emergency as he was so lethargic.  Fast forward and Tyler would be airlifted from Mackay Hospital to Townsville PICU and put in an induced coma as his little body had gone into lactic acidosis.  A few days would pass when Tyler was brought out of the coma and sadly had acquired a severe brain injury and lost all of his abilities.

After two long months and a clinical diagnosis of Leighs Syndrome, we took our precious boy home and adjusted to what life now was.  Tyler did not cope in environments that weren’t ambient; it would increase his secretions leading to gagging and vomiting and with his compromised immune system Tyler spent a lot of his life indoors at home where his environment could be controlled.  However to Tyler this world is what brought him such happiness and comfort.  Tyler loved being read to, he loved his tactile ‘That’s not my’ books, Mickey Mouse, Cookie Monster and Hey Duggee were some of his favourite character friends.  He loved when you’d blow bubbles for him, loved bubble baths, when you’d pull funny faces and especially loved kisses and cuddles.  Music played in our home 24/7, literally.  Everything from the Wiggles to Bob Dylan to Eazy E, he loved it all.  However he would be certain to let you know if he wasn’t into your song selection and wanted it changed, he’d let you know by scrunching up his face, giving you a poopy look and letting out a whinge.  His memory for songs and music astounded us.  Tyler could not talk but he moved his mouth open and closed when he’d ‘sing’ along to a song.  He was so in touch with his emotions that if you played a classical sounding song for example that pulled on your heart strings he would tear up and drop his lip.  He started forming an ‘ooo’ sound and shape with his mouth when he loved something.   With the brain injury he acquired, little new developments like this in Tyler were so special for him and for us.

Despite not being able to do every day ordinary things, Tyler did some extraordinary things.  He had the most beautiful soul beyond his years.  One was that he could tell someone how much he loved them, not by words but by a special look in his eyes. Also his smile changed the lives of others and lightened the darkest of days and made everything ok.

The events of Tyler’s passing happened fast in the sense that his suffering and regression weren't drawn out.  On Sunday 29 July 2018 Tyler woke up quite happy despite fighting a recent chest infection and being treated by antibiotics.  He gave me a cheeky smile as he grabbed his ear like he would every morning and we cuddled.  My Mum, Tyler’s Nanny had stayed with us over the weekend as Tyler wasn’t 100%.  She was walking Tyler around in his pram just an hour after he’d woken up when he started crying in a very strange eerie way; a cry I had never heard before.  I picked him up to comfort him and he went very rigid and silent, his eyes rolled back and then he stopped breathing and went lifeless.  I screamed out for James and ran over and placed Tyler on his side on his wedge in the lounge room.  I hesitated for a moment as we had been concerned that Tyler may be beginning to have seizure like activity and thought maybe he had just had a seizure and I just needed to calm myself down as I’d never dealt with one before, however he was not coming to, he was not fully conscious.  I rang 000.  The ambulance arrived and I asked whether this was end of life as James and I had many discussions that if Tyler ended up in situation again like November 2016 that we would not intervene but let him be at peace as he’d already suffered and fought so hard and that we’d wish to let Tyler pass at home.  But they didn’t really know and neither did the doctors once we were transferred to our local hospital.  But James and I knew deep down what was going on, it was like November 2016 all over again except we knew the outcome this time.  Telling the doctor not to airlift your child for further care and intubation adds to the list of the hardest things we’ve had to do as Tyler’s parents.  They moved us to a quiet room within emergency where we could close the door and dim the lights.  All monitors and oxygen were removed and only an IO line remained for Tyler’s management of comfort.  Doctors were attempting to make arrangements for us to be transferred back home.

We held our child in our arms and during his last breaths, playing his music, I whispered to him that it was ok to go to sleep now, that he had been so strong for so long and that it was ok.  In this moment he intentionally squeezed my hand and turned his head into me and moments later took his last breath which was an extra special experience I can’t describe as he was unconscious.  A piece of our hearts left with Tyler in that moment, the moment he literally turned into our Angel.  I have never seen such innocence, peacefulness, and beauty all at once, yet I have never felt so much pain, loss and heartache at the same time; Sunday, 29^th July 2018 at 5:04pm.  We took our little boy home after he passed and shared some precious time.

Tyler passed away 12 days before his 3^rd birthday.  He was meant to have a ‘Wiggles’ party.  We had already bought his presents and an outfit and had family flying over to spend his special birthday with us.  Instead we celebrated his life, still sung him happy birthday and I made his Wiggles cake and sent him some balloons to the sky; but he was the missing piece.  His final outfit was the one he was meant to wear on his birthday.  We raised over $3000 for the Mito foundation in Tyler’s honour during this time, thanks to family and friends for donating.

It's hard to encapsulate Tyler's story in a couple paragraphs; here is a link to his full journey: https://www.mito.org.au/mito-stories/tylers-story/

We all love you and miss you beyond words Tyler, and will carry you in our hearts forever.  Sending kisses to the stars my beautiful boy x

If there is ever a tomorrow that we are not together

There is one thing you should always remember

You are braver than you believe

Stronger than you seem

And smarter than you think

But the most important thing is

Even if we’re apart

I will always be with you in the heart

- Winnie the Pooh -

Abbey-Lee Mason (Tyler's Mummy)