About Isla

Our beautiful daughter Isla recently turned two years old. Isla has been diagnosed with a neurodegenerative disorder called Infantile Batten Disease. 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 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 come to visit. She loves seeing and playing with her friends. She loves music and stories and watching Maisy Mouse and Peppa Pig on television. She loves her little sister Sabine.

Our wish for Isla is to make her life as happy, comfortable and meaningful as we can. Friends of the family have formed the Isla Donegan Fundraising Group and you can join in their organised activities by clicking on the link above. Also on this website you can keep up to date with Isla and see what she has been up to. 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 .

Click here to view or download the Isla Love Photo Story. [wmv 14.8mb

 

Meet Dave to support Isla

Fred Mafrica the executive producer of Westco Productions Perth and the host of The Couch on Access 31 organises movie nights to raise money for charity. Fred has kindly offered part of the proceeds of his next movie night to go to Isla to help pay for her ongoing care.

The movie night is on Wednesday 9 July 2008 at 6:30pm at Reading Cinemas in Belmont. The movie is called Meet Dave, a sci-fi comedy starring Eddie Murphy.

For more info about the night and to see a trailer of the movie go to: http://westcotv.com.au/?page_id=129

Tickets are $15 and you can purchase tickets via email provided on the above link.

Tanya and I would like to thank Fred and the Couch for their kindness and their support of Isla. We look forward to seeing you at the movie night.

from Luke

This website has been created specifically to assist in the support of Isla, to make her more comfortable than she could otherwise be, to update and educate people about Batten Disease and to share with those of you who love and care for her, along with the people who empathise with Isla's family.

Its' goal is to celebrate the life of this child, to revel in her existence and embrace her adorable nature and returning love, and in her own way, her appreciation. If you have a child, then little more would need to be said.

And if you don't have a child, then we urge you to put it on your "must do list" !

Come in and participate in what we can only call.....a wonderous and intensly loving experience..

by Peter Herrington ( he updates the website )