Six-year-old Woodend boy Luke Cherry is one of a kind – special and very, very brave.
”He’s the strongest little boy I know,” mum Megan says, in awe of what her son has been through.
Since birth, he has battled a rare liver condition called Biliary Atresia, which affects one in 16,000 worldwide .
”Our son is in North Canterbury, and there is no one like him.”
Luke has two other rare conditions – Alagilles Syndrome, which also affects his liver, and Eosinophilic Esophagitis, which can make swallowing difficult and give him heartburn.
Luke’s skin and eyes are tinged yellow from jaundice, his tummy is swollen as his liver and spleen are enlarged, he is often fatigued, and he takes a cocktail of medications to keep his skin from itching.
His vulnerable state keeps both parents on tenterhooks, ready to respond at a moment’s notice to the next threat to his fragile life.
An early operation and the care of his parents have enabled him to survive on low level liver function, but he is deteriorating and now desperately needs a new liver.
All of this would be hard for any adult, but for a small, sweet little boy, it is heartbreaking – not least for his parents.
In a cruel twist, neither his dad, Adrian, nor Megan are suitable donors and the frustration is palpable.
”We just couldn’t believe it,” Megan says.
Looking after him requires ceaseless vigilance.
Despite his prognosis, Luke started at Ashgrove School last year. Megan is a teacher and every effort is made to ”normalise” his life.
His favourite thing to do at school is play on the playground with his friends, and he loves to watch rugby and ride his bike.
In an effort to ward off any sort of stigma, Adrian gave a talk about his son’s condition at a meet the teacher evening and his teacher has spoken to his classmates, to help them understand.
”He’s getting to an age where he notices how others react to him,” Adrian says.
The family are trying to carry on with life while waiting for a life-saving organ donor.
”The worst thing is not knowing, and the most important thing is to get the call and get up to Starship for the transplant,” Megan says.
The Cherrys have been told fewer people in Australia and New Zealand donate their organs than in other countries, but now their son’s life depends on it.