Hope For Oliver

Oliver McCoombes

Oliver has Sanfilippo Syndrome. Luckily, his baby sister Maisy does not. Without treatment, Oliver will not live to adulthood. You can help children like Oliver by contributing to our campaign to raise funds to progress critical research, care, and advocacy for all childhood dementia conditions.

Oliver McCoombes is full of endless energy, like any four-year-old boy. But unlike most four-year-olds, Oliver, aka ‘Ollie’, is battling Sanfilippo. His parents Catherine and Phillip describe Ollie as an "affectionate and very active little boy", so being told he won’t be like that forever, they say, "is one of the worst things a parent can possibly hear". 

Discovering that Oliver has Sanfilippo Syndrome was devastating. To go from having what we thought was just a developmental delay to having a terminal disease, a syndrome that will slowly rob him of everything, made our world come crashing down.

He’s such an affectionate and active little boy, so being told he won’t be like that forever is one of the worst things a parent can possibly hear. Oliver’s laugh and smile are infectious, and he’s always talking to everyone when we go out. 

Oliver is also a loving big brother to his sister Maisy. We often find him sitting down showing her a book or giving her a kiss and cuddle. When she crys, he checks on her and gets upset when she’s upset. It was of course a huge weight lifted off our shoulders when we found out that Maisy does not have Sanfilippo.

There's not a day that goes by that you don't think about Sanfilippo but at the same time we want to treasure the time we do have with Oliver and create happy memories.

We hope that the Sanfilippo Children's Foundation will help advance the science so a treatment and one day a cure can be found. Our hopes and dreams for Oliver are that we will get to see him grow up, and that he won’t have to suffer. Oliver deserves every chance at life.

Photography: Osyth Sanders