Walking for Tilly

I am Walking for Tilly.

I am walking the Camino de Compostela in Spain for my niece Tilly who terribly ill with a post encephalitis brain injury the is increasingly depriving her of cognitive and physical function.

I am hoping to raise money for her on going care to support the amazing job Marty, Nicole and Reuben (her immediate family) are doing to help her.  This is Tilly’s story.

Two years ago nearly to the week, my lovely niece Matilda was struck down with Encephalitis. It looks like flu but kills most of its victims if not treated within 72 hours.  Tilly spent weeks in intensive care and then months in the Lady Cilantro Children’s hospital in Brisbane recovering.

She has been learning to live with an acquired brain injury which has significantly impaired her cognitive function and left her with epilepsy.  Tilly literally lost a large part of her brain that year and about 4 years of learning. My sister has worked tirelessly with Tilly to build new ways of understanding the world and to give her new skills. Rebooting the hard drive is not an option because that part of her brain simply doesn’t exist anymore.

Last month Tilly seizures took on a whole new dimensions of bad and last week, nearly 2 years to the date of her first hospitalisation she has had to return to hospital.

Tilly’s brain is literally at war with itself. The seizure activity has moved from the original damage zone out and across her entire brain. The swelling caused by the seizures has led to even more loss of cognitive function, more seizures and now her own body going into defence mode trying to kill off the affected areas. Neurologists are trying to stop the seizures and the onset of further damage by using incredibly strong medication (that leaves Tilly totally depleted)  and steroids but to date they have not succeeded.

This weekend Tilly started on a program to shut down her immune system to stop her body fighting to defend its brain. While commendable, her poor immune system is actually doing her brain more harm than good.  This program, which is very similar to the treatment a cancer patient might get, places Tilly at incredible risk now and over the next 12 months but it is her only chance.

Our lovely Matilda is literally back where she started 2 years ago or possibly worse. Her family are being incredibly resilient but they need resources and support which none of their immediate family can provide as they live too far away.

Tillys family are depleting all of their resources, financially, emotionally and timewise on Tilly’s care and they need help. Increasingly they will need even more help for medication, hospitalisation, therapy and respite.  

The Camino de Compostela in Spain is an ancient pilgrimage.  It is said it runs below the Milky way across sacred ley lines. It is called “the way” not because it is a pilgrim’s path but because it guides you to your future.

The Camino is said to  help those who have lost their way, who cannot go back but cannot see the way forward.


I am walking 160 km in  8 days. This is only a fraction of  the Camino which can take  6 weeks to complete. 

I am Walking for Tilly, so that she can have a future and find her way.

Please sponsor me to help my lovely niece in any way you can.  Whether it is 10 cents a km or $1 a km or a fixed amount.    

We are grateful for all acts of support and generosity, great or small.

I am Walking for Tilly and I  hope you will join me.

Thank you for reading this and taking sometime out to share our story.