Lonely journey for Zoe's mum

SPECIAL BOND: Masterton Mum Michelle Whittaker hopes to attend a conference in Florida for parents whose children have schizencephaly - like her precious daughter Zoe.

Little Zoe Whittaker's short life has been a whirlwind of hospital stays, occupational therapy visits, surgeries and resulting infections -- but, for mum Michelle, the hardest thing about raising a child with a disability is the loneliness.

At first glance, two-year-old Zoe is a typical toddler: giggling hysterically while playing peak-a-boo, enthusiastically demolishing a plate of sandwiches, teasing her grandmother's two dogs, and cuddling up to mum once she gets tired of the attention.

In reality, her family has been robbed of seeing her achieve the precious early milestones, such as learning to crawl, taking her first steps, and saying "Mum" for the first time.

Zoe has schizencephaly, a rare disorder characterised by slits in the cerebral hemispheres of the brain, resulting in developmental delays and limited movement.

Her condition causes a build up of excess fluid on the brain, leading to epileptic seizures, and she also has chronic lung disease, thanks to her premature birth.

As Zoe is one of only two children in New Zealand with schizencephaly, Michelle's biggest support network has been a US Facebook group for affected families.

Currently, she is saving money -- and will later start fundraising -- for her and Zoe attend a schizencephaly conference in Florida, and meet others living with the condition.

For Michelle, the conference presents the rare opportunity to meet others who know exactly what she's going through.

"In the US, there's at least one child with schizencephaly in every state," she said.

"But here, no-one's heard of it -- there are no associations to help us.

"Living with Zoe's disability has become normal, but it gets very lonely.

"It would be nice to hear someone say 'we know how you feel.'"

Zoe was delivered at 27 weeks and, weighing a mere 900 grams, spent her first few months in the Neonatal Intensive Care Unit at Dunedin Hospital.

"She was so tiny --she had a dummy that was almost bigger than her head," Michelle, who also has a nine-year old son, said.

A scan 19 weeks into her pregnancy revealed found Zoe's brain was not developing as it should.

An MRI scan four weeks after birth confirmed the worst, showing the right side of her brain hadn't developed at all.

"They found there was basically no brain on one side, just fluid.

"I was gutted."

Not long after Zoe's birth, Michelle relocated to Masterton and moved in with her parents.

A seemingly never-ending series of hospital visits followed, with Zoe being fitted with shunts to divert the fluid in her brain to her stomach.

She has had three shunts malfunction, and has developed infections from the surgery sites -- including meningitis.

"That was scary -- we were in hospital a month," Michelle said.

"Her current shunt is working well -- which is good, because she can't handle the fluid when it builds up.

"She starts vomiting, and it's not pretty."

At the moment, Zoe's challenges are many: she is unable to walk and talk, cannot sit unattended for long periods, and needs a special chair to help her stay upright.

She experiences three types of seizures, gets severe night terrors and, because of her lung disease, struggles to breathe in cold weather.

"It's hard -- at my Plunket group, all the mums say things like, 'oh my baby's talking now, and I'm so proud.'

"It's frustrating for Zoe, too.

"But, she's come a long way -- she's so alert, and has a real personality."

As the hundreds of photos on Michelle's iPad show, Zoe's family aims to give her as normal and happy a childhood as possible: taking her to the park and the pool, taking her to Lollipops to play in the ball pit, and throwing her birthday parties with plenty of cake and toys.

"I'm just grateful she's here.

"She was born without a piece of her brain -- they didn't know if she'd be breathing when she came out, or if she would breastfeed, or how long she'd live.

"We try to focus on the positives."