Family seeks help for tot
Olive Neale comes across as any other inquisitive toddler as she plays in her Oratia home.
But the 1-year-old tot has a rare skin condition that makes her "extra special" to mother Kizzie.
Olive's one in 500,000 infants born with giant congenital melanocytic nevus - a 30cm brown birthmark covering almost her entire back and wrapping around her front.
She also has more than 100 smaller spots called satellites covering her head, arms and legs.
The condition affects the melanin in Olive's skin, meaning there's an increased risk of developing melanoma.
It's so rare that when she was born, doctors had never seen it before.
"It was all a bit overwhelming," Mrs Neale says.
There's limited research available in New Zealand so Mrs Neale and her husband Eddie are taking Olive and siblings, Jaxon, 8, and Meisha, 6, to the Nevus Support Australia conference next January.
The family has set up an online fundraising page on Givealittle and hope to raise $5000 to help get them overseas.
So far they've raised more than $1000.
Mrs Neale says it's beneficial talking to others with the condition and wants more information available in New Zealand.
"When Olive was born, we tried to Google her condition and nothing came up.
"That was the scary thing, not knowing anything or not having anyone to turn to."
She plans to form a committee and proper support network in New Zealand where families and those with a giant nevus can assist and encourage each other.
"Not only is it important for us to meet others who walk a similar road but it's invaluable that we acquire information about Olive's health for down the track," Mrs Neale says.
Although Olive's condition is mainly cosmetic, Mr and Mrs Neale still need to be extra vigilant when she's in the sun.
There's also a risk Olive's brain or spinal cord could be affected. An MRI scan would indicate whether Olive has the potentially life threatening condition but Mr and Mrs Neale have decided not to find out.
Symptoms include seizures or developmental delays, not a concern with talkative and energetic Olive.
"She is who she is and if something goes wrong we can deal with it at the time," Mrs Neale says.
Starship children's hospital paediatric dermatologist Diana Purvis says smaller nevus around 2cm are common in babies but giant ones classed at 20cm or more are very rare.
"When a baby is in its mother's womb, the melanocytes, or pigment cells, grow as part of the central nervous system and collect in a certain area.
"We dont know why it happens - it's not inherited but occurs in a baby out of the blue," she says.
Visit givealittle.co.nz and search Olive's Chance to donate or oliveandherstory. blogspot.co.nz to follow her journey.
- Western Leader
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