20 Jun Kirsty’s Story

Kirsty and her husband had tried for a baby for many years without success. So, when they found out they were pregnant with their daughter Madi, they were over the moon – it was the highest of highs for them.

In 2016 when Madi was just 4 years old, she was diagnosed with Ataxia Telangiectasia, a rare and incurable neurological disease. The condition combines the most severe aspects of cerebral palsy, muscular dystrophy and cystic fibrosis. It also carries a high risk of cancer and a shortened life expectancy.

Madi fell ill in March 2022 (aged 9) and was flown to Perth immediately where she was diagnosed with Acute Promyelocytic Myeloid Leukaemia.

Living in South Hedland in the Pilbara, there was no specialist medical treatment available to support Madi due to her type of cancer and the risks involved. They were required to stay within an hour of Perth Children’s Hospital, and during her treatment they called RMHC WA their home-away-from-home for over 283 nights.

“Madi fell ill in an instant, so being far from home and away from family or friends, the last thing that even crossed our minds was where we could live.

Without it we would not have survived financially or as a family. RMHC WA allowed us to stay together and get the help Madi needed.” Says Kirsty.

Kirsty describes Madi as a vivacious young girl who is cheeky, extremely friendly and has the kindest of hearts.

Because of her diagnosis, she is wheelchair bound and her motor skills are jolted. Despite the challenges she faces, Madi stays positive and is always front and centre of the BFF Club during her visits. The Learning Centre offers her a place to pursue her passions while being in the company of other kids. No matter the activity, she always gives it her all—nothing can stop her.

It’s hard for Kirsty to imagine life without access to RMHC WA.

“Being put in a circumstance that you can never prepare for but having a home and all the support that comes with it is something that RMHC WA gave us, and I can never be more thankful for that.

During the hardest and darkest days, whether it be an employee or volunteer, someone was always there to help. It truly is remarkable what they do.” Says Kirsty.

Despite being based back home in South Hedland, the family still call RMHC WA their home-away-from-home, when they travel to Perth every six weeks for check-ups and treatments.

Latest stories about our families