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

5 May 2009

Isla is calm and settled most of the time lately. It is so lovely to see her relaxed. She is still waking several times during the night and has sleep medicine to help her, but her nocturnal wakings are usually no more than an hour each time now, which is much more manageable than before. She is sleeping more during the day and usually has a couple of good naps in her armchair.

In January Isla had her tummy tube replaced with a MicKey button and detachable feeding tube. This is very discreet and it is nice that Isla doesn’t have a tube permanently dangling out of her clothes. It is very easy to use and we will be able to replace it ourselves rather than Isla having to go back to hospital to have this done. Isla has half of her fluid meals as a continuous pump feed overnight now because she was having trouble getting sufficient volume through her gravity feeds during the day.

The members of the Kalamunda Lodge of Freemasons made an extraordinarily kind and generous donation to Isla recently. Initially we had hoped to use it to purchase a swing for Isla but she now needs more physical support than the swing provides. Instead it will be a huge help towards the cost of a supportive car seat for Isla that enables her to recline slightly and keeps her safe and comfortable. Thanks so much to the Kalamunda Lodge for their wonderful gift. Sabine is quite besotted with her big sister. Her first word was ‘Isla’ and now when she is picked up from daycare she chants ‘Isla Isla Isla’ during the drive home. She loves to snuggle Isla and give her hugs, and her favourite place is Isla’s bed. Isla is gently accepting of even the roughest love from her little sister. It is wonderful seeing our two girls spending time together.

Tanya, Luke, Sabine and especially Isla.

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 )