Sophias journey.

Sophia is our bubbly, happy, friendly and cuddly daughter who has a twin brother Isaac who has a different personality he loves to just run and do all things that involve out doors and he is very caring towards his sister.

Sophia got diagnosed with neurofibromatosis type 1 (nf1) from birth. When she was 2 years old we got the news that she has suffered one of the side affects of nf1 called Optic Nerve Giloma ( tumors behind the eye). And our lives had drastically changed.

There is no known cure for neurofibromatosis and is with her for life, and tumors can always pop up at any point in her life.

The tumors are behind both eyes but has affected her left eye more as she is blind in that eye. She has most vision left on her right eye.

The aim of her treatment at the moment is to stabilise the tumors. But won't shrink them.

She has been on chemo for over a year now, with about 30 weeks left to go.

She has had a rough journey along the way many hospital visits, lots of transfusions, various tests and lots of trips to Starship Children's Hospital.

Sophia has been able to get to kindy when she has been well. So she can have some normality and get some time out of the house. But cannot go when she is unwell.

9 weeks ago Sophia had a test done that didn't come back as we'd hope as they said the chemo has affected her kidneys, so treatment had stopped, but 1 week ago we got the news we had got given the wrong results. Which would result in more treatment.

When Sophia is in hospital she is stuck in isolation, so we try make the stay as entertaining as possible. She loves to draw and paint and read books.

Sophia may also be trying a new drug soon called Avastin. Which can help regain her vision. This is very costly and works out to be $1000 every 3 weeks. We will find out soon if we are to proceed this.

All proceeds will go towards

Extra travel costs.

Ongoing and additional costs.

Living costs.

Unfunded medication costs.

Large print books.

Extra support she may need.

Helps to cover wages loss.

Books and toys for low vision.

Paints etc for artsy stuff while in hospital.

Help with sibling care.

Every little bit helps, thanks for taking the time to read this.