“You sometimes think, ‘if there’s a god then jeez, he’s cruel’.”
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The worlds of Rutherford’s Leigh Kenyon and her daughter Lucy Treharne were rocked after her kidneys shut down overnight on October 9.
Within hours, the pair’s lives were irreversibly changed – with Lucy unable to go to school and Leigh quitting her job to look after her.
Lucy’s father has already launched into the extensive process of becoming a donor. While a blood and tissue match, he’ll have to complete more than 20 medical tests to be given the final all clear to give a kidney to his daughter.
The family know it’s not a lifetime solution, with Lucy likely to require another transplant in 10-15 years.
“Even though it’s not a permanent fix, it could mean 10 years of a normal life for her without being hooked up to cords every night,” Leigh said.
Lucy’s difficult road started 18 months ago when she was diagnosed with juvenile nephronophthisis, the condition which would eventually cause her kidneys to fail.
While shocked at the time, Leigh said the disease was supposed to be “slow-acting”, with 11-year-old Lucy unlikely to require a kidney transplant until the age of 18.
However, the news had “barely sunk in” when, in October, Leigh rushed Lucy to Maitland Hospital with dangerously low blood pressure.
Initial screening showed her kidneys had dropped to just four per cent function, requiring an urgent blood transfusion and an emergency trip to Westmead Hospital.
The shutdown required the “sweetest little girl” to undertake a gruelling dialysis regime for two months before the family could return home to Rutherford.
Lucy still requires 14 hours of dialysis a night, while Leigh has had to quit her job to look after her daughter, who will have to be home-schooled for the foreseeable future.
“She’s a little trooper, but it’s still hard,” Leigh explained.
“She misses school (at Rosary Park Branxton) and little things, like being able to swim when it’s hot. That’s when it’s most hard.”
Leigh said it was a cruel blow for the “sweetest, kindest little girl you’ll ever meet”.
“Life’s certainly different now but I’m okay with it because I’ve got her,” she said.
“She melts your heart.”
If Lucy’s dad passes the numerous screenings required to become a donor, they hope the surgery can be done by the end of the year.
If that takes place, the family will have to live in Sydney for up to four months as Lucy undertakes rugged courses of anti-rejection drugs.
It’s an expensive process, and one family and friends have already begun helping with by organising a Summer Fun Day fundraiser at Maitland Park Bowling Club on Saturday, February 10.
Leigh said the helping hands were appreciated “so much” after a tough 18 months.
“No parent can prepare for that, but the support from the community means so much,” she said.