Mum determined to find answers to tot's rare condition

Angel Rumbal with her daughter Aariyah Rumbal.

Angel Rumbal doesn't know what the future holds for her 18-month-old daughter Aariyah but she's determined to find some answers to the toddler's incredibly rare condition.

Born with spots over her body that left midwives and doctors baffled, Aariyah ended up at Starship Hospital when she was just 3 months old. Doctors first diagnosed leukaemia, then discovered she was actually the first child in the country to suffer from Juvenile Xanthogranuloma, or JXG.

The condition causes lesions over the body and on her internal organs. It has badly affected Aariyah's liver, which Starship specialists described as one of the most "scarred and abnormal" livers they'd seen.

Because the condition - referred to as a "friend of the family of childhood cancer" - is so rare, affecting just a handful of children around the world, little is known about the disease.

"They don't know why and how it is caused and they don't know how to cure it," Ms Rumbal said.

In the year following her diagnosis Aariyah underwent weekly chemotherapy. In recent months that's been reduced to fortnightly so she doesn't become too resistant to the chemotherapy.

So far she's done 56 lots of chemotherapy, although the doctors have told Ms Rumbal it's not working the way they hoped it would. If that continues, they'll review treatment in June.

"The doctors are out of their depth, I'm out of my depth."

She said there was the risk the lesions would spread, and attack other parts of Aariyah's body - like her eyes.

Ms Rumbal, who is a solo mum of four children, said she'd been so focused on day-to-day life with Aariyah and her other children that she hadn't concentrated too much on the bigger picture and future.

But she'd been encouraged by her dad to set up a fundraising Give a Little page to help explore alternative treatments for Aariyah, including moving overseas to be closer to doctors with better knowledge of the condition.

Ms Rumbal said friends had started referring to Aariyah as the "girl in the bubble" as she didn't go outside unless she was in a covered pushchair, to minimise the risk of infection.

For that same reason, she and the four kids didn't go out too much, she said.

To donate, go to https://givealittle.co.nz/cause/aariyahsjourney.