Hope For Callum

Callum O'Reilly

We’d spent years investigating Callum’s developmental delays and myriad of medical issues, but when we were told that he was being tested for Sanfilippo, we knew the awful truth before the pathology results were confirmed.

Callum’s story was just like so many of the other children affected by this disease; he even looked similar to other Sanfilippo children. On May 12, 2022, just a few days before International MPS Awareness Day, we received the call from Callum’s paediatrician that we’d been dreading. Callum was 4.5 years old when he was given the devastating diagnosis of Sanfilippo Syndrome.

It's heartbreaking to watch this disease take a little more from Callum each day. He’s lost his favourite words and he can no longer recite his favourite books. He struggles to play with his peers and he is beginning to really struggle with his mobility.

Despite the heartbreak we feel about everything he’s going through, each day with him brings us all so much joy. Even though he’s being constantly affected by this horrible disease, he’s still the same silly, happy, and active child that we’ve always known and loved. He loves music and is a hilarious dancer, and he loves the beach and playing in the waves. His favourite thing to do is spend time with Nanny and Poppy; they play lots of silly games and watch his favourite cartoons.

No family should have to experience the heartbreak that we and all the other affected families have to endure every day, knowing our children are suffering from an incurable and terminal illness. We fundraise for the Sanfilippo Children’s Foundation because we’re hopeful for a better future for all children affected by Sanfilippo.