Nova’s Journey: Living with Rare Ichthyosis - Thank you MoreFM

Nova is our bright, happy, and spirited three-year-old who brings so much joy to everyone around her. She is boisterous, funny, and full of life, while living with a rare genetic skin condition called Autosomal Recessive Congenital Ichthyosis (ARCI).

ARCI sits on a spectrum, and Nova is affected by both Lamellar Ichthyosis (large, plate-like scaling) and Congenital Ichthyosiform Erythroderma (redness with fine scaling), making her condition more complex. There is no cure.

Her care is intensive, requiring specialised skincare every three hours during the day, and sometimes once or twice overnight depending on her comfort levels. Standard creams in New Zealand are not effective, so we rely on products from the United States, costing around $60 per tub, with four tubs used each week. There are others more natural emollients we buy locally too, but at a premium.

Nova cannot regulate her temperature and is at high risk of overheating, while also being vulnerable to skin infections. She travels to Starship Hospital every two months for ongoing care under her dermatologist and ENT specialists.

We never imagined asking for help, but we will do anything to keep Nova safe, comfortable, and thriving. Any support truly means the world to our family.

Thank you from the bottom of our hearts.