Lucas Tiefel

Lucas Tiefel

Lucas had Sanfilippo Syndrome. Sadly, Lucas passed away in April 2022, aged 7. By contributing to our campaign to raise funds to progress critical research, care, and advocacy for all childhood dementia conditions, you can ensure other families don't have to suffer the same heartbreak.

Just before Christmas 2014, Phil and Rohanne Tiefel became the proud parents of two tiny little men – Lucas and Dominic. In 2017, they found themselves in disbelief when one of their twin boys – their little ‘blonde bombshell’ – Lucas, was diagnosed with Sanfilippo Syndrome. 

Lucas had already been nicknamed Loki (the ‘god of mischief’) when I was pregnant with him as he insisted on defying the ‘norm’ and creating his own growth plan. Lucas had a very low growth throughout the pregnancy and since birth had been slow to grow and develop. When he finally learnt to crawl around the age of two it was the best Christmas present anyone could ask for!

In August 2017 we received the news that no family could ever prepare for; he was diagnosed with Sanfilippo Syndrome Type A. The only blessing that day was that Dominic was not positive (however he was confirmed to be a carrier of the Syndrome). The initial impact was one of horror and disbelief. Even though we had undergone a lot of investigation we could never have anticipated such a bad diagnosis. As the news went out, we were devastated. It was an extremely difficult time for all of us. 

Lucas was best buddies with his twin, Dominic (unaffected). He loved the outdoors and wrestling with Dad. 

Lucas endured all types of illnesses, operations and tests too varied to mention; throughout he maintained his happy attitude and was brave beyond belief in taking on everything that was thrown at him in his short life.

To this day, there is no cure for kids with Sanfilippo, but there is a team of dedicated scientists, researchers and fundraising families all working hard to help find that illusive cure.