Ruby-Rose

Ruby-Rose with her father Scott, on his birthday in September 2015

This is Ruby with her dad Scott in September 2015

Ruby has a rare neurological disorder called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) that was triggered by mild pneumonia she suffered shortly before her 5th birthday.

In 2008 Ruby went from being a perfectly healthy five year old girl, to gravely ill within a matter of six months.  Her immune system was attacking the peripheral nerves in her body.  This process rendered Ruby unable to walk, she had difficulty using her hands, swallowing, she suffered severe pain, bladder and kidney problems and finally the nerves were damaged controlling her vocal cords and she was left with a life-threatening condition called vocal cord palsy.

As many parents will testify, it is a very dark and lonely place you go to when your child is suffering.  It is truly unbearable.

The stress of having a sick child is difficult enough without the compounding factors of little family and financial support.  Ruby’s family is originally from England and have no family in Australia.  Ruby’s parents both work for themselves and when she was in hospital for eight months, Ruby’s mum was unable to work at all and her dad had to scale back his hours dramatically to be with her too.

Eventually Ruby’s mum was forced to sell her business, sadly at a considerable financial loss and during the time it took to sell, it was losing money each week.  It was the hardest time of their lives and the added stress of having to stay positive and happy was pushing them to breaking point.

It took eight months, but finally Ruby’s condition was diagnosed.  She was incredibly lucky, it was a treatable disease.

Ruby’s wonderful doctor, Dr. Richard Webster advised that he would start treatment, but not to expect too much.  She received her first dose of IVIG, had a severe reaction which was awful and treatment had to stop.  However, after sleeping off the morphine, Ruby woke at 11pm and asked her mother for a drink.  She wanted to go with mum to the kitchen so Jane turned to get her wheelchair.  When she turned around, Ruby was standing beside her bed with a big grin on her face.  She told mum she didn’t need her wheelchair anymore and proceeded to wobble down the corridor bouncing off the walls to the kitchen. “We were both laughing and crying, the nurses joined in walking up and down the corridor – it was a WONDERFUL moment, one I’ll never forget”, says Jane.

Despite this dramatic response to the IVIG its effects were short lived and Jane and Scott knew Ruby had a long fight ahead of her. She has continued to go into Westmead Children’s Hospital every three weeks for the last eight years, receiving blood products from generous donors.  Jane and Scott are eternally grateful to these people for their compassion and kindness.

Ruby’s disease is a relapsing disease, which makes her grab life with both hands during the periods of wellness. She loves to sew, dance and swim and thanks to Brainwave has enjoyed swimming lessons for the last 6 months.  The swimming lessons are invaluable for Ruby, they are helping to strengthen damaged muscles and to give her back her confidence.

When Ruby was asked about her swimming progress she said, “It feels nice.  I love being in the water and I feel proud that I can swim.  Thank you Brainwave for paying for my swimming lessons.  I love them”.

Read more about how Brainwave supports families with equipment here