Annabelle’s Story
Our beautiful life began to change six months before Annabelle was diagnosed with DIPG. We saw behavioural changes in our very kind, caring and sweet three-year-old Annabelle. She also had sleep disturbances and was diagnosed with anxiety and night terrors. I was told that I was overreacting and an anxious first-time mum.
Three months later, Annabelle suffered from dizziness, was pale, very tired, and our already tiny girl lost weight. She was diagnosed with low iron and hay fever. Two months prior, Annabelle had slight facial paralysis and was diagnosed with Bell’s palsy. 1-2 months prior to diagnosis, Annabelle suffered from morning vomiting and was diagnosed with a couple of tummy bugs. I protested it wasn’t a bug as none of the family were sick. I knew something was terribly wrong.
Two days before diagnosis, Annabelle began limping. I was finally listened to sent straight to ED and on the 30th of December 2016, Annabelle was diagnosed with DIPG. My heart was broken.
We were told to ‘go home and make memories’ when Annabelle was diagnosed with DIPG. I now hate the word ‘memories’. I don’t want to make memories with my children. I want to live life with them.
There was no treatment offered at diagnosis other than palliative radiation, which Annabelle had done daily for six weeks, under a general anaesthetic, as she was only three years old. We had to move to Sydney from Canberra with our 18 month old baby for duration. A Biopsy was not an option or offered at diagnosis. We needed hope.
We sourced an experimental treatment in Mexico with minimal side effects at $30,000 a treatment. While we knew it wasn’t curative, we did this treatment to buy Annabelle time. We continued to fight for awareness and funding, hoping that Australia would develop a treatment for Annabelle. #lemonfacechallange #loveforannabelle
Eleven were treatments done in Mexico, and Annabelle’s Sydney radiation oncologist confirmed shrinkage. Eventually, the insidious, aggressive tumour grew resistant to the treatment.
As the tumour grew, Annabelle suffered from hydrocephalus and had a shunt insertion. We tried a second round of radiation, which didn’t do much except give us one more magical Christmas with our sweet girl. We were out of options… Annabelle died on the 16th of January 2019. My heart was shattered.
Without our communities’ support and fundraising efforts, we would not have survived or gotten this extra time with Annabelle. At this time, RUN DIPG was not an established charity. Matt and Phoebe’s daughter Josie was diagnosed in the middle of Annabelle’s DIPG journey. Despite their own challenges, they always had time to support us and offer advice.
