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Wollongong, New South Wales
Brannon was such a special gift. Despite the many personal regrets I have about how well I coped during his illness, I will always look back on Brannon's year with a profound sense of wonder. He has gone away, but for those of us left behind, he remains a cherished memory. We made sure to take plenty of photos and videos, but they are poor reflections of the real thing. The real little boy who would never grow up. His Peter Pan outfit, the party dress-up character for his first birthday, remains in careful place on the change table. Undisturbed and at rest... just like him.
Brannon's Eulogy
"We always understood that Brannon's time was limited and that his life would come to a premature end. Yet all the knowing in the world does not prepare you for when that certainty becomes real. Brannon's passing was the culmination of the progression of an insidious genetic disease, known as 'Type 2 Neuronopathic Gaucher's Disease'. It begins to work on the brain before a child has even left the womb, and remains to this day untreatable and uncontrollable. The chances of such a child being born in Australia, were apparently over one in a hundred thousand. We have a twenty-five percent chance, at any event of pregnancy, of having a child with this affliction. And as far as we are aware, we were the only case of this particular type of disease in Australia during the time of Brannon's life. The odds that Kylie and I could find each other from countless others and have our first child, a perfect little boy yet doomed to such an awful condition, continues to astound me. Perhaps there may be some significance to all of these overwhelming odds. But as yet, I lack the understanding to reason why.
"Brannon was born five and a half weeks premature, and survived to be one year, one week and one day old. In between the many clinical tests, hospital visits, fits and breathing difficulties, sleepless nights, chest infections, high temperatures and endless suctioning, he blessed our lives with moments of joy and pride. His cheeky smiles only grew more endearing and beautiful with age and little teeth. His clutching hands and long fingers that found our fingers the perfect size to grab and hold. The way he would play with his knee when he was lying down, or scratch at the side of his head, almost absent-mindedly. His gorgeous yawns and sleepy blue eyes. His desire for conversation at four-thirty in the morning. His warm hugs and his fondness for a good, warm bath. The expression on his face when we took him to the Sydney Aquarium: we passed through the underground water tanks, and he watched the sharks glide overhead with what looked like awe. As hard as it is now to think about anything else apart from his suffering, it will be these memories that I will eventually cherish and hold dear above all others.
"Brannon taught me lessons that no amount of schooling could ever supply. During his life, I have been forced to face the issue of my own mortality. I have been exposed for my impatience and intolerance, and had to deal with my anger and frustrations. I have learnt about selfishness, and what it means to make sacrifices for the ones you love. I was cruising along without a care in the world, and in the space of a year I experienced the wonders of life, death and everything in between. I am perhaps now both closer and further away from god than I will ever be. Life now has a different meaning, and for that I have my son to thank. He will always be my special little man, and will have my love to the end of my days. God willing, I will get to hold you again.
"Finally I remain intensely proud of the courage and strength of my beloved wife. When I grew frustrated and angry with what fate had dealt us, she took over without question. She spent endless nights by his side in hospital, caring for him without complaint. Early on we had decided that one of us would always be with him, and the bulk of that duty was discharged by her with care and compassion. Where others would have crumbled, she stood firm in the absence of hope. She has handled the past few days with a reserve that I admit to not believing she would have, and I am very happy to be proven woefully wrong. I want her to know that I love her terribly and that I will always be here for her."
Brannon's Life - Part I
Tests that he had at this stage (leading up to the 14th of May) included:
All these generally came back negative. His iron levels were quite low, and he continued to vomit during bolus feeds down his NG tube (to try and raise his calorie intake). With the addition of a Kangaroo pump, he was given milk continuously, which seemed to be a lot easier on his tummy.
Brannon stopped breast feeding on the 25th of April, and went onto the bottle. Even then he could never take anywhere near as much milk as he needed to. A protein allergy was even considered, and for a few days he was trialled on perhaps the foulest smelling formula known to mankind. However, that produced no apparent improvement to his condition. The problem was then considered to be either an issue of Gastroenterology or Neurology.
By this stage, Brannon had seen a whole heap of different medical staff: doctors, gastroenterologists, speech pathologists, physiotherapists, social workers (for mum and dad), occupational therapists, dieticians and the neurologist. It was the neurologist who finally suggested cerebral palsy, as at that stage it was becoming clear that his symptoms were definately neurological in nature. At the time we were actually quite relieved. From the information we had obtained on the internet, cerebral palsy was not a progressive condition - the damage had been confined to an unknown 'event' at some stage during his development, and there should be no further deterioration. While we considered ourselves lucky and began to think seriously about life with a disabled child, it would only be a matter of days until our premature good fortune would be shattered.
(to be continued)
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He had a lot more tests, similar to those he underwent at Wollongong. His squint was picked up with another eye test, but it had been noticed before that stage. A modified barium swallow (with mum feeding him the fluid instead of Brannon having to swallow it on his own) found that he did not have any swallow reflex, so he was taken off all oral feeds. Just to top things off he picked up a urinary tract infection (UTI).
