William's Story

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Meet William and his family

William (above, centre), 14 years old, has undergone two kidney transplants: he has one kidney donated from his mother and one from his father.

William was born with kidney disease and low blood sugar, undergoing his first kidney transplant when he was just two and a half years old: his father James was his donor.

Six months after the transplant William’s body rejected the kidney and although medication reversed this temporarily, William then suffered the ordeal of another rejection.

The family self-referred to Rainbow Trust when William was eight, after hearing about it through their friend whose son had kidney disease.

Family Support Worker Janet has provided practical and emotional support: spending time with Ellie, aged nine, and Arthur, 11, while their parents were in hospital with William; connecting with William, focusing on Pokémon and Manchester United; and talking to mum, Nancy, to ensure she has space to express how she feels. Nancy said:

“Janet has seen us at our very best and seen us have some really bad days,”

William survived on his dad’s kidney until he was 11 years old but then he deteriorated. Doctors decided he needed Haemodialysis at home to take over his kidney function.

For two years William was connected to the dialysis machine through a central line in his chest for four nights each week from 10pm until 7am and his parents would set up and sterilise the equipment.

William underwent his second kidney transplant on 4 April 2023: this time his mother was the donor.

During William and Nancy’s operations and their recovery Family Support Worker Janet took Ellie and Arthur on day trips and to their grandparent’s house and entertained them.

“It really helped Ellie and Arthur,” Nancy said. “I was so grateful Janet took them out. The focus is on William a lot so I did not want them to feel as though they had been forgotten about. Ellie loves seeing Janet. She talks to them and takes them off and plays games with them so they don’t get bored.”
“We would have struggled without Janet. We were struggling before Rainbow Trust. When you have multiple children and a child who is chronically sick that’s unpredictable. Trying to juggle everything it’s made such a difference having Janet. It’s taken a lot of weight off, especially during the transplant.”

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Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

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