Jireh Winiata spent the first 12 months of her life in silence.

It wasn’t until earlier this year that the Lower Hutt girl, now 17 months, heard her parents’ voices for the first time, after a cochlear implant was fitted.

“She came to life,” mum Coral Winiata said.

”She’s definitely a happy baby, she’s got the cheekiest smile.”

But being profoundly deaf was just one complication for Jireh. Tests in the first few weeks of her life revealed myriad medical complications, including a heart murmur, partial blindness in one eye, having no balance nerves, and spinal vertebrae that were not fully formed.

Jireh’s parents knew something wasn’t right – her crying was weak and she wouldn’t feed.

”We were already prepared for something to come back that wasn’t quite right, but we didn’t know the extent, or what,”  dad Paris Winiata said.

Jireh was eventually diagnosed with Charge syndrome, a genetic pattern of birth defects that can be life-threatening depending on the severity.

It affects about one in every 10,000 births worldwide and each letter stands for an aspect of the condition – coloboma of the eye, heart defects, atresia of the choanae (a blocked nasal passage), retardation of growth and/or development, genital and/or urinary abnormalities, and ear abnormalities and deafness.

People with the condition can have different combinations; Jireh has C, H, R and E.

In her short life she has been in and out of Hutt Hospital for operations, checkups and tests.

She still has a nasal-gastric feeding tube as can’t manage large volumes of milk or food. She has to wear a contact lens in her left eye, replaced every three months, after a cataract and lens were removed to restore her sight.

The cochlear implant fitted in March at St George’s Hospital, under the Southern Cochlear Implant Programme, in Christchurch, has been the most beneficial procedure to Jireh’s development – she is now starting to make noises and react to sounds.

It has also helped her learn to sit up. Walking is next, but communication will be the big breakthrough.

”Talking, even just a word, that will be cool and really exiting,” Mrs Winiata, 24,  said.

Mr Winiata, a personal trainer, is looking forward to running around the back yard with his daughter.

The progress has been so great her parents are fundraising for a second implant to be fitted.

”With her condition and the development side of things, we just want to do as much as we can to make sure she can get the best start,” Mr Winiata, 26, said.

The Health Ministry paid for the first, but won’t fund the second. The couple have $38,000 after four months of fundraising and hope to raise the $50,000 needed by October. They also have to cover travel to Christchurch, accommodation, regular checkups and replacement implants, which cost about $10,000.

They couple said they were overwhelmed by the generosity of family, friends and strangers who have donated items to be auctioned on Trade Me from Wednesday.

– © Fairfax NZ News


Baby Jireh’s fundraising website.

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