Kidney vital in girl’s fight for life
"With another kidney it could give us another decade with her, they just don't know."
Jo Barrington
Genevieve Barrington is like any other four-year-old. She enjoys cartoons, is full of smiles and loves to climb, but she may not live to see her teenage years.
The Inglewood girl is currently in renal failure and desperately needs a kidney transplant.
She is also fed mostly through a tube placed into her stomach and she can’t talk.
The youngster suffers a rare genetic disorder called Methylmalonic acidemia (MMA), one of only three known cases in New Zealand.
Genevieve is on a waiting list for a new kidney and without it the kindy-going girl could be bedridden within a year.
‘‘But she’s stabilised for a while so she’s given us a little more time,’’ said mum, Jo Barrington.
‘‘With another kidney it could give us another decade with her, they just don’t know.’’
However, Jo said there were fears of what the disease would do to the donated kidney.
As a result of the illness Genevieve battles elevated ammonia levels which has caused her a brain injury and subsequent autism and organ failure.
Her dad John Barrington likens the disease to diabetes, except in Genevieve’s case she can’t properly break down protein.
‘‘Unlike diabetes there’s no insulin,’’ he said.
‘‘It would be literally like a diabetic only being able to control their blood sugars by diet.’’
Both parents are carriers of the disease but when Genevieve was born they had no idea there was anything amiss with their first born.
Jo said it was about 36 hours after her little girl arrived when things started to go wrong.
‘‘She stopped feeding and was screaming,’’ she said.
‘‘We couldn’t get rid of the carbon dioxide that was present from the ammonia.’’
Jo said it was the raised ammonia levels which caused the initial damage.
The family spent a month in neo-natal intensive care but that would be only the beginning of their regular and lengthy hospital stays.
The most recent visit was for Jo, who at 26 weeks pregnant with their second child, had to undergo emergency surgery to have her appendix removed this week.
‘‘She just really missed the hospital food,’’ John quipped.
The South African nationals, who relocated to New Zealand about nine years ago, underwent IVF to conceive their second child, another little girl.
Jo said there were genetic tests carried out to ensure their second child wouldn’t also have MMA, however she will be a carrier.
Despite the sombre prognosis for Genevieve, the meticulous dayto-day planning of her diet and the unrelenting obstacles thrown in the family’s path, they remain upbeat and looking to the future.
Jo said they owed that to Genevieve and her happy and lively spirit.
‘‘There’s nobody else, it’s just us. You’ve just got to keep on going,’’ she said.
‘‘Everyday it’s a fight to keep her alive but she’s still here, she’s still alive.’’
‘‘There’s always somebody worse off,’’ said John.
A Givealittle page has been set up in support of the family with already more than $1000 raised.