To Russia With Love - My Amazing Ms Recovery
Woman’s Day Magazine NZ|April 15 2019

Nicky’s destiny was

Julie Jacobson
To Russia With Love - My Amazing Ms Recovery

At just 44, Nicky Tooley was facing the reality of life without her mobility. Having been diagnosed with multiple sclerosis at 22, her condition had grown progressively worse over the last seven years.

The once energetic single mum, who used to run 45 minutes each day and who thought nothing of hiking for hours around her home in Lower Hutt’s western hills, had reached the stage where even walking around the supermarket was unbearable.

Her feet were numb and sore, she suffered from chronic headaches and pins and needles, and she had become partially blind in one eye. Plus, memory loss, fatigue and an inability to concentrate were affecting her work as an account manager at her brother’s packaging company.

Feeling that she was being robbed of a normal life and a future with her 13-year-old son Zac, Nicky pinned her hopes on an emerging but controversial therapy, hematopoietic stem cell treatment (HSCT), which uses a patient’s stem cells to “reboot” the immune system and halt the progression of the disease.

But first there was the seemingly insurmountable matter of cost to tackle. HSCT is publicly funded in the US, UK, Mexico and Japan, but is not yet available in New Zealand.

It comes with a huge $100,000 price tag and no guarantees of a cure.

However Nicky, who tragically lost a sister to a brain tumour just over three years ago, was determined she wasn’t going to end up in a wheelchair. “I always knew I’d try everything before I’d let that happen.”

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