Our beautiful daughter Isla has Infantile Batten Disease, a degenerative neurological disorder. Batten Disease is the common name for a group of genetic disorders with similar symptoms including the onset of blindness, seizures, the loss of speech and the ability to walk or crawl, and ongoing physical and mental deterioration. Isla is one of only three children in Australia with the infantile version of the disease, which begins between the ages of 6 months and 2 years and progresses rapidly. There is no cure.
Despite the challenges of this illness, Isla is like all other small children. She loves it when her grandparents and her friends come to visit. She loves music and stories. She loves sitting outside with the sun or the breeze on her face. She loves school, and especially being in the swimming pool there. She loves her little sister Sabine.
Our wish for Isla is for her life to be as happy, comfortable and meaningful as possible, and we try to do everything we can to make it so.
On this website you can keep up to date with Isla and see what she has been doing. You can also read more about Batten Disease.
Thank you for visiting and wanting to learn more about our little girl.
Luke Donegan and Tanya Elson
On 5 August 2009 Luke was interviewed on 720 local ABC radio about Batten Disease and Isla. To hear this interview, click here.