a critical diagnosis of advanced Polycystic Kidney Disease, a disease that causes kidney failure as large, fluid filled cysts develop throughout the kidneys. Twelve hours after he was born, he was flown to Toronto's Sick Kids Hospital. Taylum's parents were told to expect the worst, but they did not give up on their son, and they were granted their first miracle when he managed to survive his first week. By the time he was ten weeks of age, he had to have two very dangerous surgeries to remove his large, diseased kidneys, who's combined weight were just shy of 2 pounds. His first surgery almost took his life and his parents were asked if they would like to consider putting him into palliative care. My the grace of God, he turned the corner.
Taylum is now reliant on a life sustaining renal replacement therapy called hemodialysis, offered only to infants and children at Sick Kids Hospital. For 2.5 hours each day, he is attached to a machine that continuously filters his blood, and removes fluid from his body. He does not produce urine as he has no kidneys. Ultimately, he requires a kidney transplant, but first he has to meet the weight requirement of approximately 22 lbs. He is currently about 2.5 pounds shy of this goal, at 17.5 months of age. Children with kidney disease struggle with weight gain and growth, and Taylum relies on a surgically placed feeding tube for much of his nutrition, so it is difficult to predict how much longer this will take. He has lived in Toronto with his mother since his birth, and won't be able to come home until he receives, and recovers from, a kidney transplant. After transplant, Taylum will have to remain in Toronto for three months, and if all goes well, will finally be able to move home. He will have to return to Sick Kids for appointments every two weeks for the six months that follow, and if all is stable, his appointments will become less frequent.
Recently, after months of tests, the family learned that Darren is a match and was approved to donate one of his kidneys to his son when Taylum is big enough. Darren will have to take 3 months off work to recover from his surgery, and help his wife care for Taylum post transplant, which will be an entirely new learning curve for the parents.
Taylum's parents, who live in Chelmsford, have been living apart since Taylum's birth. His mother Desiree, lives with him at Ronald McDonald House in Toronto, while his father, Darren, travels back and forth to visit as often as his work schedule permits. But they have a
made it their life's purpose to support their son through his difficult journey. Since his birth he spent 98 days in the Neonatal Intensive Care Unit, and another 99 on the 6th floor ward of Sick Kids. He has had 7 surgeries and encountered and overcome countless obstacles. He wasn't supposed to survive his first week, and he will be 18 months old in October 2014. He is a happy, friendly, vibrant and loving child, who inspires those around him daily. For the remainder of his life he will have health issues, and his future is uncertain, so his parents consider every moment with their miracle child a gift.
The emotional toll of having a critically ill child is immense, and the stress of this has only been magnified by the financial burden that has come with hand in hand with his health situation. The cost of living in Toronto is high, as well as the travel expenses incurred for Darren to travel back and forth. Additionally, there are substantial costs associated with Taylum's feeding tube as well as medications not covered by their insurance totalling over $4,300 per year.
Taylum's parents are tremendously grateful to come from such a compassionate, and generous community. They cannot wait to bring their son home to Chelmsford, and God willing, have him enjoy as normal a childhood as possible.
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