In 2021, as a new family of four, we were given the most heartbreaking news that would change our world forever. Our son Kye, was diagnosed with Sanfilippo syndrome, a terminal neurological condition that is a type of childhood dementia. There is no cure and we have made peace that there may never be in Kye's lifetime. But we want to share our experience and help raise awareness about this horrible disorder, and reach other families to let them know they are not alone. Our hope is through supporting the search for a cure one will soon be found, and there will be solutions available for our family and all other families around the world who are battling Sanfilippo.

Our beautiful boy, Kye Patrick Hardman, made his entrance into the world on 1 November 2018. Life was blissful at this point. Kye was born healthy — you know, the ten fingers and ten toes kind of healthy. The healthy we are conditioned to believe is all you need to hear. Kye was born with inguinal hernias in his scrotum and an enlarged anterior fontanelle, but we were told several times this can be quite common. Little did we know then that having both probably wasn't as common as first thought. 

Kye was a happy baby although he hit his development milestones a little slower than expected, and for our new little family everything was good until it really wasn’t. In April 2021 we welcomed our daughter Grace to complete our family. We couldn’t wait to see Kye as her big brother and watch their bond evolve as they grew up together.

We were starting to worry a little about Kye’s slow development and questions began to be asked. Eventually his paediatrician recommended Kye undergo some genetic tests to try and figure out what was going on.

Three weeks after our boy’s third birthday we received the call no parent ever wants to receive from the team at The Children’s Hospital at Westmead. It was horrible, earthshattering and rocked us to our core. Our forever wasn’t going to have our Kye in it. Telling family and friends over the next couple of days meant literally replaying that moment over and over again. It sucked.

Our hearts were completely broken. There was the worry of what was to come, and wondering how long we would have with Kye. What does it all mean? And what about Grace? These questions were slowly answered as we learned more about Sanfilippo, and honestly each blow was more devastating than the next. Based on Kye’s progression it’s likely he will only survive to his early teens. We were told Grace had a one in four chance of having Sanfilippo so we needed to have her tested. Just before Christmas 2021 we received the most bittersweet news that Grace did not have Sanfilippo, and while we cried tears of happiness, our sadness for Kye and knowing what lies ahead was overwhelming.

The one genuine blessing in all of this is that Kye doesn’t know what is happening to him. He lives each day smiling — he has an absolutely infectious smile and brings so much joy to everyone around him with his loving, happy nature. He loves to squeal and dance along to his favourite shows. The Wiggles, Thomas the Tank Engine and Bananas in Pyjamas are on repeat in our house. Each day with him is truly a blessing and we treasure every moment we have.  

We hope that by raising much needed funds, creating awareness and supporting the work of Sanfilippo Children’s Foundation as it drives forward vital research that no family and child will ever have their world turned on its head like ours has been. 

We hope for a cure.

We hope that everyone will Smile For Kye.

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