ForeverMissed
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His Life
October 10, 2015

When I say the name Jayden Vayro everyone has a different story to tell.

Jayden has always lived life in a hurry, even to be born. So much so that he couldn’t wait for the midwife to come back from her tea-break to enter this world. He was born 2 weeks premature on the 3rd of August 1998, weighing just 6 pound 5 ounces. He was perfect, a baby brother and son at last. In those first few days he was a very quiet baby. That sounds great but that was the problem. Fortunately for him he also had another infant problem, jaundice. But, ironically, it was this that ultimately saved his life. Because he had to be readmitted to have UV light therapy he was in the neonatal unit the day that his metabolic condition first showed up. At 8 days old we had our first ICU admission.

Again, it was one of those amazing coincidences that the first doctor to see him had not long attended a training course on metabolic conditions and decided that since the hospital had paid to send him there he’d better test for one of them, just in case.  Although they were fairly certain that it was an infection that was making him so sick.  So it turns out it was a metabolic condition called OTC where the body cannot break down protein. By an early diagnosis and immediate treatment using liver dialysis we managed to escape with only slight bruising of the brain. Children with OTC usually have a bleak outcome often suffering severe brain damage.  Jayden however clearly showed them where they could shove their odds.

Jay had 63 hospital admissions throughout his short lifetime including 3 visits to ICU and 4 surgeries.  Yet his illness never held him back. Whenever life got too serious for him he’d pull out his humour. He’d proudly tell everyone what number blood test it was, at last count, according to him, it was 1037. When his cousin Leisha complained about having a blood test, he’d look at her, smile with lots of empathy and say, “It’s not that bad, you just have to suck it up cupcake.” Despite how he may have been feeling at the time he would always reply, “I’m good.” when asked how he was at hospital.

Despite his own problems Jay was also very good at working out when those around him weren’t feeling well or was feeling down. At these times he would do his best to make that person feel better, whether it was giving them a hug, a smile or with some of his clowning around. His supply of love was endless.

Toddlerhood for Jay was an extremely difficult time. On top of the usual challenges of learning to walk and talk, the fast rate of his development meant Jay had hospital visits almost every second week. Jay loved hospital; passing the time playing play station, watching his all time favourite Bob the Builder DVD over and over again or even playing soccer down the hallways complete with a dip stand to scoot along on. As management for his OTC, Jay was on a special low protein diet. When we say low we’re talking 3 grams a day; the equivalent of a chocolate bar. But not once did he ever resent this, in fact he used to get unbelievably excited for a trip to Hungry Jacks involving a garden salad, 6 chips and a soft drink.  The only time he ever rebelled was when he was 3 and wanted to try cheese. He ran up to his mum and asked if she could ring the hospital to say he would be up there in about an hour because he wanted to try cheese. 

Despite his low protein diet Jayden loved a barbeque. Not so much the eating side of things, although he was loved to eat his mushrooms, vegetable kebabs and his hash-browns or bubble and squeaks, but just for the joy it gave him to see people together.  It was usually he who proposed the idea and eagerly searched out the ingredients.  To him mealtimes were something that could bring people together.  The family’s regular Thursday ‘chicken night’ is another example. Although he couldn’t eat any of the chicken it didn’t matter to him. It meant that his extended family, normally about 17 people, were together in one place and were enjoying themselves. Family birthdays and their ‘happy cakes’ won’t be the same without his boisterous singing and smiles. He took great pleasure in sitting with his grandma to choose the perfect birthday cake, not just for him but for everyone.

For someone who had such a limited range of foods that he could eat, food played a big part in his life. Whether it was taking his Aunty Mandy out to Da Vinci’s cafe for a coffee, (coffee, coffee) or his big sisters out to lunch on a Sunday, food was his way of getting people to slow down and enjoy each other’s company.

Food was such a big part of his life to the point that the first thing he wanted after having his PortaCath inserted was a Subway salad. He assured his Mum that he was sure it would be OK, but she might just check with Aiofe about the pickles, olives and jalepenos. He loved garlic (once eating a whole clove in a sitting), French or Italian dressing on his pasta, asparagus and making his own nachos from vege chips and mustard.

Because of his strict low protein diet there was concern that Jay would suffer from a poor muscle tone. So he started doing what every small child would do in these cases, he started climbing a purpose built climbing wall similar to those found in indoor rock climbing centres. The first about eight feet high, just tall enough that he could climb up and see into our neighbours back yard over the fence, to the great surprise of the neighbour who found herself confronted by the cheeky grin of a three year old staring down at her from the top of a 6 foot tall wooden fence. The next version was about 4m tall and required a custom made harness, complete with carabineer and abseiling rope. What reduced his enthusiasm for using it was the fact the goanna who used to visit the yard could climb the tree it was leaning on as well as he could, but the goanna didn’t need a harness!

In January of 2003 Jay started school; year 1 at Capalaba primary. He came home the very first day so excited; not only had he made many friends, but he’d found on who was even shorter than him! Without the ability to break down protein meant little natural ability to grow. So he was small for his age for a long time. Not that you would ever notice, there was nothing he couldn’t do because he was little from rock climbing to soccer.

Jay was a good sport in the true sense of the world. He tried everything, soccer, Aussie Rules, Oztag, triathlon and swimming. He didn’t care if he won or lost, he just wanted join in and support his friends.  To him the most important part of a game was the team huddle at the start and the cheers for the opposing team at the end of the game. He would often tell the coaches that he would sit on the side line so that everyone in the team could have a game.  Jay’s triathlons were a sight to see. We have fond memories of a small 7 year old wearing size 4 tri pants.  He wasn’t the fastest swimmer in the field but he made up for it with courage. To see him finish the swim, run to the transition area to collect his bike and then mount it brought tears to eyes. Not the least of which was the way he mounted the bike like a cowboy in a western movie, holding the handlebars with both hands, then leaping over the back wheel and onto the seat, with himself and his entire family praying that he wouldn’t stack it.

The beach was an interesting place for Jay. Initially he was apprehensive of the waves. When asked at Kings Beach one day if he wanted to go for a swim he replied, “I will. When the waves go away.” Once he got in he was hard to get out. He enjoyed riding his body board and last Christmas progressed to a couple of sessions of surfing. The smile was always there, even when it came up spluttering water after being dumped by a wave.

 It was always immensely satisfying to take Jayden fishing – his dad did it regularly and at times uncles, great uncles and granddads stood in. For Jay, fishing was a big picture. There was first of all being out there in company which he loved.   There was also the satisfaction of landing a fish and learning how to use all of the gear, about tides, where to fish etc, ie. fishing lore!  Like all young boys and more than a few old ones there was an element of fantasy there as well - the more times a fish story was told the bigger the fish became.   There was a studious scientific side to Jay’s fishing as well - when he caught a new fish species he couldn’t identify he would grab the encyclopaedia and read about it. Overall, of course, fishing was in the great outdoors which Jayden loved. He would also love to cook the fish he caught for others so that they could enjoy it.

 

Jay was often in a hurry.  More often than not it was to greet people and to hug them while the rest of the family followed in his footsteps. But often it was to get the front seat, where he would sit and wait for the person who thought that they were going to be the one sitting there, smiling back at them through a locked door with the window up. Sometimes he even got to drive the car (though never on the road, to his great displeasure) so long as someone else worked the pedals. So although his Grandma may have asked a lot of times if he drove there to get up the stairs so fast, he was just in a hurry to get to her for a hug. When his sisters started driving lessons he decided he’d take up flying and walking in an attempt to avoid the roads. Secretly he was very proud of his two big sisters. His sister Steph also wants to point out to him that she didn’t run over the traffic island.

 

This year was a hard one; in May Jay was admitted to hospital with uncontrollable high levels. We made our second ICU visit this admission when tragically the pressure in his head resulted in brain swelling. This left Jay with an acquired brain injury. Do you think that would bring him down?  Not once did he ever lose his cheek, his determination or his fight while he spent the next 4 weeks learning to walk and talk again. Even though for a long time he struggled to communicate or make his body do what his mind wanted he never gave up. The doctors gave us a timeframe of a year to get him back to school; he did it in 2 months.

Then we met Talking Tom. For those who don’t know the Rotary club donated Jay an IPAD with a speech program to make communicating easier. But it was the free app of a cat repeating everything you said which brought Jay hours of amusement as he harassed everyone.

Jay always loved animals. His favourite places in the entire world were Australia Zoo and Underwater World. When he grew up it was his life’s ambition to become an animal rescue officer. He would often be found lying on the lounge stroking one or both of his family’s cats.

On Monday the 4th October Jay woke up and said, “Mum I don’t feel well.” So back up to the Mater they went. Even though his ammonia levels weren’t overly high Jay was admitted to ICU straightaway to commence dialysis to give him the best chance. By Tuesday night he was up watching his favourite TV show, “Packed to the Rafters” reminding mum that he was naked and desperately needed his boxers. On Thursday the 7th his levels were increasing as his body struggled to fight off an infection. Unfortunately at 1am his brain swelled. At 12:30pm Friday the doctors confirmed he had passed away. When the question of organ donation was raised, with Jay’s strong wish of donating everything but his eyes so he could see where he was going and his manhood ringing in our ears his family agreed.  Jay was able to give the greatest gift of all to 4 people, the gift of life.

Jayden was an inspiration to all of us in his 12 short years as he defied countless odds and touched the lives in the way he always greeted with hugs and affection, and left with a hug and a TTFN.

 

It gave his family great comfort to know that one of his wishes came true and he had the opportunity to change the lives of four other people who received his organs.

We know, feel and see the many footprints he left in the lives of those who met him. We will always cherish his memories