Jonty Smolenski was born in 2012 and is from Christchurch, New Zealand - he suffers from Trichothiodystrophy (a condition related to CS) He is a very social, fun-loving boy with a gorgeous smile and infectious giggle!

Jonty has an older brother and younger sister who absolutely adore him, and he reciprocates this love back! In 2018 the whole family, together with Jonty’s maternal grandparents, made the huge trip to attend their first Amy and Friends conference.

They all had an amazing time meeting everyone and sharing lots of fun, laughter and love, as well as receiving fantastic support and understanding of the difficult times associated with raising ‘a different type of perfect’ child.

Despite the many challenges they face with Jonty, the strength and determination he displays daily is inspiration to everyone sharing his journey!



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