Saving Grace

Perhaps the most frustrating and heartbreaking part of this story is the fact that little Grace's illness went undetected for almost a year. She had some behavioural issues which were thought to be due to ADHD as well as Oppositional Defiant Disorder (ODD). The changes in her behaviour were in fact due to her growing brain tumours.

Grace is 8 years old. A beautiful, bubbly, intelligent little girl. Always up for mischief and fun.

Grace has always been a strong willed girl, but incredibly affectionate and kind. She has a heart of gold and would help anyone in need.

In 2014 it was becoming increasingly obvious that Grace's behaviour was escalating, more so than just that of a strong willed child. She had increasing outbursts (never violent thank goodness), her concentration and self control was lacking. She was frequently in trouble at school and home for not listening and not doing as she was asked. Her school work began to suffer, as did her relationship with her peers.

We were referred to CAMHS - Child & Adolescent Mental Health Service and Grace was subsequently diagnosed with ADHD and ODD ( Oppositional defiance disorder).

As a result Grace commenced medication that we hoped would enable her to concentrate at school and level out her behaviour.

After about 7 months on two different medications it was decided to take her off all of it. It wasn't working anyway and she had lost 14kgs since January and was worryingly thin.

Grace had become incredibly clumsy, was sleeping all the time, occasionally slurring her words and mixing up friends’ names that she knew well, along with some other side issues. She was also experiencing severe headaches, Grace has an incredibly high pain threshold and for her to be lying on the couch doing nothing told us it was bad.

She was admitted to Timaru Hospital on the 7th of Sept. She had an MRI scan after which we were told she had two brain tumours, one on either side of her brain. Gutted does not begin to describe how we felt!

Transferred to Christchurch Tuesday morning for further MRI scans. A diagnosis of Neurofibromatosis type 1 was made, a genetic disorder. She has two large tumours. One operable, one not. She is at the extreme end of the scale as these have been growing for many years. She has had two shunts inserted to drain fluid and there is as yet an unknown issue with her brain stem.