"We got five wrong diagnoses and were told it was anything from a pressure mark from birth to strawberry birthmark. In actual fact, we ended up diagnosing it ourselves after searching on the internet."
Ms Riley said the condition, gradually deteriorating Zahnee's sight in her right eye and causing her constant headaches, was more prevalent in Third World countries.
Ms Riley and husband Paul Campbell have refused to give up on their daughter and have spent five years searching for an answer to her problem, throwing them into a "whirlwind" of examinations, fundraising and campaigning.
The heavy financial toll of constant visits to nine different specialists at Waikato Hospital has crippled the family.
They were told in May that the life-changing procedure needed to reposition Zahnee's eyes could not be offered in New Zealand.
"The only operation they could do here is a cosmetic operation. I'd also sent Zahnee's medical notes around the world, seeing if I could get an opinion about it, but I kept hitting dead ends," she said.
She was on the verge of accepting the fact that Zahnee would be stuck with the condition for the rest of her life when they found New York-based ophthalmologist Dr Mark Steele.
Ms Riley was elated to hear from the parents of several other children with the same condition that Dr Steele had successfully treated - but then came the next challenge.
The cost of the treatment, accommodation and air fares, amounted to $50,000.
A funding application has been made to the state Special High Cost Treatment Pool for one-off treatments not otherwise funded by the public health system, and the Papamoa community has also rallied to raise money.
Her school St Thomas More Catholic School has hosted a mufti day and a sausage sizzle while their local supermarket, Mount Maunganui New World, has given the family $1500 worth of groceries for a raffle.
Ms Riley has also put together a cooking book - but with just $16,000 in the kitty so far, the family still need all the help they can get.
"We'd like to do it as soon as possible as Zahnee is showing signs of physical problems.
"She can't hold her head straight and has to hold it on an angle, which is causing stress in her shoulders.
"She's also struggling with her writing, her eyesight, her coordination and her headaches can get so bad that she comes home from school crying."
The battle has been tough, often too much, yet Ms Riley has no regrets. "I never knew I'd be thrown into this world of being an event manager and a campaigner, but when it's your own child, and you see her struggling every day, you have such a passion about it."
The journey has revealed much about Zahnee, too.
"She's very old for her age and hates being so little and only 5 years old. She actually treats me and Paul like we're lucky to live here. It's funny, you raise your kids thinking you're going to teach them about life - but it's her who has taught us."
Helping hands
How to help:
* Make a donation to Zahnee's ASB Account "Zahnee's Cause" - account number 12-3217-0140729-00.
* Send Zahnee a message of support on her Facebook site, Zahnee's Cause.
* Email her parents at paulnjade@xtra.co.nz
