Hope For Isla & Jude

Isla & Jude Donnell

Isla and Jude are siblings with Sanfilippo Syndrome. Without treatment, they will not live to adulthood. You can help children like Isla and Jude by contributing to our campaign to raise funds to progress critical research, care, and advocacy for all childhood dementia conditions.

Isla and Jude adore each other.  It is unimaginable one may lose not only their sibling, but also their best friend. Without a treatment, they will not live to adulthood. 

When our son, Jude, was born in 2011 we felt our family was complete. Big sister, Isla, who was just under 2 at the time, fell in love with Jude immediately as did we all. We considered ourselves blessed having two happy, healthy children and we had such hope for our future. Isla loves cuddles with her therpay dog Remy and Jude is full of affection and makes friends wherever he goes.

When Isla was three we received the devastating news that turned our world upside down. She had Sanfilippo syndrome. Unfortunately, 4 weeks after Isla’s initial diagnosis we learnt that Jude had inherited this dreadful disease too and that both children were type A. The English language does not contain words that adequately describe the impact that this double diagnosis has had on our family, we were absolutely shattered and devastated and this is beyond anything we ever imagined possible.

At the moment there is no effective treatment available to “Sanfilippo children”. But around the world there are dedicated scientists, researchers, patient groups and families devoting their lives to changing this. We are proud to join this movement and will fight and fight and fight not only for our children, but for the others living under the spectre of Sanfilippo and future families who have not yet heard of this disease but will one day be faced with this agony.

Read more about this family in this Good Weekend article.