She needs 24-hour care and in just 4 years has cost ACC $1.75 million, which could balloon to $34 million over her lifetime.
Just a few weeks ago, Mrs Hooper and her husband Mark accidentally broke Charley's leg when they were propping her up, adding more surgeries to the growing number Charley has already endured.
As a founding member of AIM - Action to Improve Maternity - Mrs Hooper has pushed for an independent inquiry into the maternity sector and wants an independent perinatal database.
"I won't quit until I get the database," she says.
It would cost about $5 million, record every birth - not just those in hospitals - and how mother and baby fared. It was the only way to get vital information needed to improve the maternity system, said Mrs Hooper.
In July this year, it was revealed by the Perinatal and Maternal Mortality Review Committee that 98 newborn babies who died in 2009 could potentially have been saved.
"If 98 babies died needlessly common sense would tell you that exponentially more were damaged. How many is too many?"
At the start of maternity reforms in 1990, New Zealand ranked 20th in the OECD in infant mortality, which counts babies who die in the first year of life.
By 2002 it had dropped to 24th out of the 30 developed countries and more recently ranked ahead of only Mexico and Turkey for the number of women who died giving birth.
Mrs Hooper has also gone into battle for about 30 families around the country whose children were disabled or died because of botched births, helping them claim ACC for medical misadventure and supporting them through coroners' inquests.
She said she was pleasantly surprised to be nominated for the award and hoped it would bring more attention to AIM, a registered charitable trust.
"I'm hoping that this wee mum of a disabled kid sitting in Glenview trying to change things will be taken more seriously as time goes by," she said.