In November 2018, Maree Newman received devastating news – their child, Ebony was diagnosed with a rare Craniopharyngioma Brain Tumour. Ebony underwent surgery but the tumour was not fully removed.
As a result, Ebony will need constant monitoring for the rest of her life, with a possibility of radiation treatment in the future. She also suffers from rare Diabetes Insipidus. Despite all this, she lives a full life with mum, dad, Michael, and brother, Liam.
With Ebony’s diagnosis, she takes medication daily and needs regular paediatric appointments, blood tests and specialist follow-ups in Brisbane. However, Ebony’s parents still look to her for inspiration each day. “She is so resilient,” Maree told PakMag. “We try to live as she does, and live in the moment day by day.”
Ebony’s parents need to be on constant guard with her Diabetes Insipidus. At night time, she often gets hyperactive and very thirsty, which is exhausting for the whole family. The financial burden of Ebony’s diagnosis often puts the family under a lot of stress.
“It’s been a hard few months, but Ebony keeps us going,” Maree said. Maree is hoping to raise more awareness for rare diseases such as Ebony’s. “It has opened our eyes to so many new things,” Maree stated. “We’ve just finished doing a Mother’s Raffle which raised $1170 for the Brainchild Foundation.”