In August 2019 our son Hugo was diagnosed with Fragile X Syndrome, a lifelong genetic disorder which also causes many other conditions and disabilities. Every day is a struggle for him and often us as his parents and his sister Madison. 

Many people are unaware of this condition and therefore we would like to raise awareness and raise money for such an amazing society who have supported us since Hugo’s diagnosis as we had absolutely no idea what this was or what it meant  

As a result of Fragile X Syndrome, Hugo also has been diagnosed with severe autism being severely affected in all areas, global development delay, sensory processing disorder, non verbal, severe food aversion and sleep apnoea to name a few. 

Hugo has been in hospital on numerous occasions with illnesses, testing, treatments and numerous health professional appointments, these include, multiple blood tests, MRI, lumbar puncture, operations, EEG’s for possible epilepsy and general health checkups  

As you can imagine, life as we know it has changed dramatically and life for Hugo will never be what we had expected it to be but this doesn’t mean it’s not amazing. Hugo is such a joy to be around and we love him very much. 

We hope to raise awareness and lots of money for this condition and the society who support so many families. 

Thanks for your support. 

Melissa, Winston, Madison and Hugo