Jarrah is a typical nine-year-old boy. He’s bright, funny and kind and has a wonderful group of friends at his local school – Campbells Creek Primary School.
What makes Jarrah extraordinary is his resilience and the wonderful sense of humour he has maintained while becoming blind.
At the age of two, Jarrah was diagnosed with retinoblastoma, a rare form of malignant cancer that rapidly develops from the immature cells of the retina in the eye. For Jarrah, it was advanced in both eyes from the start, with complete blindness already in his right eye and only partial sight in his left.
Three days after this frightening diagnosis, Jarrah’s right eye was surgically removed, and the next three years were spent fighting to save his left eye. Jarrah’s treatment plan included a full year of chemotherapy, two rounds of radioactive plaque therapy, and seemingly endless laser and cryotherapy treatments. The combined treatments were successful and Jarrah was in remission for three years.
Devastatingly, last year the cancer returned. Jarrah’s vision in his left eye had worsened as his medical team tried to pin-point the cause. The discovery of a growing tumour confirmed their worst fears. Jarrah underwent another three rounds of chemotherapy and by the end of 2017 the tumour had stopped growing and the sight in Jarrah’s left eye was partially restored.
The cruellest blow came in May this year when the tumour was once again found to be growing. Jarrah, together with his family, made the heart-breaking decision to have his left eye removed, rendering him completely blind.
Incredibly, Jarrah missed less than a week of school after this life-changing surgery. In the months leading up to this point, he had begun working with Guide Dogs Victoria, learning to walk with a cane and making ‘mind-maps’ of his home, his school and local town.
Jarrah’s illness has taken a massive toll on his family.
“It has been emotionally exhausting, and due to the financial costs of treatment and purchasing vital equipment, we have had to endure continual stress; worrying about how we are going to afford to make Jarrah’s life as comfortable and as normal as possible,” Jarrah’s mum Belle explains.
“His two brothers have just had to go without, but they have both been so wonderful through it all.”
Jarrah remains the funny, smart and kind boy he has always been. He writes a regular jokes column for the weekly school newsletter so he can practise his Braille touch-typing and is able to do most things his classmates do, with the aid of a Braille machine and assistance from his classroom aide.
He loves art class and is learning to play the guitar.
July 27 was a significant day as Jarrah received his new prosthetic eyes. They are the same colour as his mother’s blue eyes and everyone agrees they are stunning. Jarrah couldn’t wait to get his “new eyeballs” and now feels “more normal” when he wears them.
Family friend Kym Cross said Jarrah’s family had incurred many expenses that they were struggling to cope with. “Our goal is to rally the Mount Alexander community to raise some serious dollars to assist Jarrah’s family and to ensure the best possible future for this exceptional young man,” Kym said.
“So now we are calling on the Mount Alexander Shire community and beyond, to help us raise as much money as we can to assist Jarrah and his family.
“To this end, we are organising a fundraising campaign for Jarrah called ‘Jarrah’s Fight For Sight’.”
To find out how you can help and what the money raised will pay for, visit www.gofundme.com/jarrah039s-fight-for-sight