Royal treatment for three princesses

The Robson sisters (from left) Rangimaria, 6, Starr, 5, and Huiterangi, 14, loved the limo that took them and grandmother Aroha out on a day of partying and shopping. Photo / Sarah Ivey

Looking at the lovely Robson sisters, the only visible feature of their rare terminal disorder is their greater-than-average height.

Starr, 5, Rangimaria, 6, and Huiterangi, 14, suffer from Marfan syndrome, which is caused by a genetic defect that affects the skeletal and cardiovascular systems, eyes and skin. The Glen Innes girls grow much faster than is usual, which stresses organs such as the heart. In time, their arms, legs and fingers will be disproportionately long.

The disorder has claimed their grandfather, Steve, who was at giant at 2.16m, and, a year ago this week, the life of their mother Isabelle, who was only 30.

At the weekend, the three girls were treated like princesses by Make a Wish, a first for the foundation, which has never before helped a single family where three siblings have progressive terminal illnesses.

Huiterangi, Huia for short, was surprised with a limo and a $2000 shopping spree at Sylvia Park. When Suzy Bell from the foundation told her the news, she turned to her grandmother, Aroha, who is raising the children on her own, and gave her a big cuddle.

Mrs Robson said the special day one year after their mother's death meant so much to the girls.

"Huia's been a bit mamae [sad], fretting for her mum, but she's also been a rock.

"She's my warrior, she's always behind me. She's good with her sisters, does her chores, does so much for me."

Contact sport is forbidden for the girls because their bones can be brittle. Huia's had two broken arms and a broken leg after falls.

The younger sisters were thrown a fairy princess party on Saturday, Starr dubbed Fairy Rosebud for the day. For Rangimaria, who loves Snow White, there was glitter and lipstick. New pink bikes for her and Starr topped off the party with friends and cousins.

Huia reckons when it comes to royalty, Nana Aroha is a queen for taking such good care of them all. She knows her life will be shorter than most - by looking after themselves and taking medication the sisters may live to 40 - but Huia wants to be like any other teenager having fun, a boyfriend and lots of shoes.

Mrs Robson said only about a dozen New Zealanders had the disease and she wanted to raise awareness of the syndrome.