Our little monkey
In late Jan after years of Ollie having seemingly innocuous symptoms (reflux, hearing loss, speech delay, tonsil/adenoid issues), the puzzle was solved, with a terrible diagnosis. We were devastated to be told he has Sanfilippo.
Cue a crash course in something we didn’t know existed, let alone something we are both carriers of; Sanfilippo is autosomal recessive.
Sanfilippo is a fatal, rapidly degenerative, metabolic disorder, sometimes known as childhood dementia. And there is currently, no treatment or cure.
Thankfully it is very rare, and Ollie is one of (maybe) 3 kids in NZ who suffers from the syndrome. And it’s not all doom and gloom - Ollie is still the same amazing little monkey, we just understand him better and he continues to blow us away with his pure joy for life. He adores his big sister (who is not affected) and loves tractors, motorbikes, mountain biking and “hammer nailing”.
We are hoping for a clinical trial, but at this moment, there are none for Ollie’s subtype. And while we wait, we want to raise money for The Sanfilippo Children’s Foundation which has been set up to drive research into this disease. We, along with many others, hope for a world without Sanfilippo Syndrome.