By Dan Hutchinson

Three-year-old Nova Groosman is getting her moment in the spotlight as the community rallies to help the family deal with her rare genetic skin condition.

Nova has ichthyosis, a condition caused by a gene mutation that produces skin cells at an abnormally high rate. The condition means she needs to be moisturised every three hours and checked constantly for skin infections.

"Her body doesn't stop healing essentially, whereas our bodies know when to stop healing," says Grace Aleni, Nova's mother.

More FM is hosting a five-hour fundraiser on May 16 at the Lake Taupō Hole in One Challenge from 7am-Noon. The venue will donate $5 from each bucket of balls sold and $1 for every ball that hits the pontoon.

The family faces significant ongoing expenses, particularly for specialised Aveeno cream that isn't available in New Zealand's standard product range.

They must import the cream from the United States or Canada, where it costs about $US20 (NZ$34) per container at stores like Walmart.

Local pharmacists cannot help due to New Zealand licensing restrictions, Grace says.

Jordy Groosman, Nova's father, says most alternatives are paraffin based but given the volume they have to put on her skin every day, they use a natural product.

It is costing the family thousands of dollars.

For 18 months, the product was out of stock through their usual supplier, forcing them to rely on friends, family and others who have heard about their situation to bring containers back from North America in their luggage.

These people frequently get stopped at customs, requiring the family to contact authorities for release.

"We would go through periods of nearly running out," Grace says.

Nova requires hospital care every eight weeks at Starship Hospital in Auckland, where she undergoes general anaesthetic to have her ears manually cleared of wax and skin buildup.

The family stays at Ronald McDonald House during these visits.

Grace says Ronald McDonald House has been “a lifeline for our family.

“They provide accommodation, meals, and support during the toughest of times, including a four-week stay when Nova was in NICU.

Grace raised thousands of dollars for Ronald McDonald House in March this year by running 210km and she uses running to help raise funds for other causes too, averaging about 10km each run.

They have set up a Givealittle page to help cover the costs called ‘Nova’s Journey: Living with Rare Ichthyosis’.

"It's quite uncomfortable to set up a fundraising page for your own family," Grace says.

"I've only ever fundraised for charities that have really supported our family."

There is no cure for ichthyosis. While gene therapy treatments are being developed overseas, existing medications are too harsh on organs for children to safely use.

Donations can be made by texting Nova559 to More FM or through a Give a Little page. Details are available on the More FM Taupō Facebook page.