Thomas was born in 2000, so our family joke is that he was the only one who caught the Y2K bug! Thomas loves to keep busy and spends a lot of time going for drives or walking along the beach. The rest of the time he loves to sleep in and hang out with his family and watch movies. We're a close-knit family – a true team, or as we like to say: "Team Thomas".

We heard the words Sanfilippo Syndrome for the first time when Thomas was three years old. While the doctor explained the condition and Thomas’ future I couldn’t believe what I was hearing, as I watched this energetic little boy play with his brothers, Jack and Samuel..

Thomas loves music. He used to love the song Blue Eyes by Limp Bizkit. His brother Jack plays the guitar and Thomas loves listening to him. He loves going to the beach and there are beautiful bird and wildlife parks around here which he loves to visit. 

For now this time together is precious.Our house is always full of activity and noise – and Thomas loves it that way!

We’re inspired by the work of the Sanfilippo Children’s Foundation and Megan Donnell in particular who has pioneered this organisation and created so much awareness. She must be commended for the time and effort she has put in. We are all time-poor yet she (and all you guys) have managed to do all this incredible work even with all of your own commitments.

I feel there is going to be a major breakthrough soon. Even though we will one day say goodbye to Thomas we all still live in hope.