Story
Our beautiful daughter, Luella, was diagnosed, at only 11wks of age, with a very rare and catastrophic form of epilepsy called Infantile Spasms/West Syndrome.
At almost three years old, she has daily seizures, global developmental delay where she cannot walk, independently stand or independently feed herself, and is non verbal. It has been nothing short of a horrific journey so far as we have been unable to obtain seizure control or freedom.
So as proud ambassadors of Epilepsy Action Australia. I am again running the iconic City to Surf, to raise money for children living with Epilepsy. It’s a challenging 14km run from the city of Sydney to the iconic Bondi Beach.
This year however, in conjunction with EAA, I will also be supporting a child (or potentially children depending on funds raised) for their first Intensive Therapy Program with Napa Centre* (terms and
conditions apply & open to Australian residents & Australian Napa Centres only). This program at Napa Centre will offer a child, who also suffers from Epilepsy, an incredible opportunity to access one of the worlds best Neurological Therapy centres, along with their highly trained & incredible therapists.
So I am again running because my daughter cannot.
I am running because it is an absolute privilege to be able to move.
I am running to be able to give a child the therapy opportunities Luella has had with Napa Centre.
I am running for all the other children and their families who so tragically live with Infantile Spasms/West Syndrome and the array of epilepsies, that often prevent them the freedoms we have.
So as I pound the pavement over those 14km, I will for another year be praying with every fiber in my body, that one day Luella will be able to run with me.
So we ask you to please dig deep and donate generously to help us raise much needed funds, to go towards helping children like Luella.
And if you can, register and run (or walk) with me. Because many living with epilepsy cannot.