What is Sanfilippo?

Isla and Jude's story 

 

Isla and Jude are brother and sister. They adore each other. Eight year old Isla loves dressing up and singing. Jude is full of boundless energy and makes friends wherever he goes. It is unimaginable one may lose not only their sibling but also their best friend.

 

Isla and Jude both have Sanfilippo Syndrome. Without a treatment they will not live to adulthood. There is currently no treatment and no cure for Sanfilippo but there is hope and research is the key.

 

I first met Isla and Jude when I worked at Harbord Kindy, a preschool on Sydney's Northern Beaches.  Isla was just four years old at the time and Jude was two years old. They were diagnosed with this dreadful disease shortly afterwards. I was so moved by their story, the Donnell family and the work of the Sanfilippo Children's Foundation.

 

I became very close to Jude when I worked as his inclusion support teacher just before he went to big school. Jude has an infectious smile and a joy unlike anything I have seen before. I consider myself lucky to have come to know such a special individual. 

 


 

What is Sanfilippo?

 

Sanfilippo Syndrome is a rare genetic condition that causes fatal brain damage. It is referred to as a childhood disease because patients never reach adulthood. Over time the brain gets progressively damaged. Children experience hyperactivity, sleeplessness, loss of speech and cognitive skills,mental retardation, cardiac issues, seizures, loss of mobility, dementia and finally death usually before adulthood. 

 




How you can help!

 

You can help Isla and Jude and children like them just by shopping here at Talulah and Belle.

 

We are proud to be charity partners with the Sanfilippo Children's Foundation.  I made the decision when starting Talulah and Belle to donate 10 % of all profit in honour of Isla and Jude to this very special cause. I could not think of a better charity to support. 

 

For more information or to donate directly visit: www.sanfilippo.org.au