Aido is my youngest son and is the inspiration for this website coming into existence. He is only ten years old and has been to hell and back with chronic illness. In 2012 he was diagnosed with a very aggressive type of kidney disease called Focal Segmental Glomerular Sclerosis that destroyed his kidneys. The medical team told us that it was the worst case that they had ever encountered. But this was no ordinary kidney disease. It was a cruel double-edged sword that not only took his precious kidneys but also his immune system with it.
Our lowest point was the day the medical team told us that his life was now seriously threatened. To add insult to injury he had a whole host of other complications such as an enlarged heart, anaemia, brittle bones and a seriously compromised immune system. The smell of urine off his breath in the morning was a daily reminder of the gravity of the situation. In the end, his waterworks dried up and words will never be able to express the utter despair that we felt as his Parents.
He had to endure home dialysis for nearly two years, a regime that involved twelve hours of lying in bed connected to a machine. Vicki and I were given an intensive training course and we gladly took on the responsibility of caring for our son. The home dialysis system had only a certain lifespan and when our time ran out we ended up at a cliff edge. Then this happened...
My brother-in-law Tommy told us that he wanted to donate a kidney to save Aido's life. For medical reasons, my wife and I were precluded from donating a kidney which propelled us into a desperate search for a kidney. Only for Tommy, we would have had a long wait. At the time Aido was put on the cadaver list (deceased kidney donor) which in effect meant that we had to wait for a tragedy to happen to save our son. For us, that seemed so cruel and ironic.
Eventually, the transplant went ahead and Aido survived what was classed as a very high-risk surgery because of the type of disease that he had. However, our troubles were far from over when the medical team informed us two weeks after the transplant that the deadly disease had returned. We were absolutely devastated. Aido had to face into months of gruelling treatments that took a severe toll on his body. After presenting with clinical meningitis, the medical team abandoned all treatments, and even though it seemed terribly counterintuitive to us as his parents, we had no choice but to abide by the experts.
Aido is now doing very well. The disease is still rumbling on but seems to be losing its momentum. The medical team feel that he has stabilised at long last, after six hellish years and eight operations. Recently, he fulfilled a lifelong ambition to jump off the pier at his favourite holiday spot in Kells Bay, Co Kerry, Ireland. All he ever wanted to do was jump off this pier with his cousins and we celebrated this momentous occasion later that night with a bottle of champagne. His Freedom Jump can be viewed on my Facebook opt4happy page.
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