Story
First of all thank you for taking the time to take a look, listen & learn our story about our boy.
Our boy ‘Cruzy’ was diagnosed with Fragile X Syndrome just before he turned two years old. Fragile X is a rare genetic condition that is caused by a mutation on the X Chromosome. This chromosome is responsible for creating a protein to help support brain development, and where this lacks, causes severe global developmental delay.
My Cruzy is currently non-verbal & experiences extremely challenging behaviours. As he grows he is getting bigger & stronger and will unfortunately never be able to live life independently and always require support.
As a parent, we often think that the ‘expectations’ of having a son is considering their future, could they be a footballer? In a trade? Or perhaps a boxer.. How many gfs/bfs.. who knows 🤷🏻♀️
However with Cruz’s diagnosis, all of the above has become a distant memory. Taking each day as it comes and hoping that conquering basic life skills such as washing and dressing is an achievement worth celebrating above all else.
The Fragile X Society is a small charitable organisation who receive no government funding and have been the only people that I have felt comfortable, safe & seen. They truly understand the pressure of parents who are often misunderstood or not recognised due to having such a rare condition & go above and beyond to help as much as possible despite being a ‘small’ charity.
Not only this they have seen potential in me, my family & my goals to help shape the the future for not only my boy, but fellow FX families to help make this a more recognisable & understood condition.
If you are kind enough to donate today, however little it large, please know that it is for an amazing cause, to continue to help support families, raise awareness & invest in research as well as educating health care professionals, in the hope that our families are no longer addressed with ‘whats that?!’
All my love and appreciation, & on behalf of all fx families, thank you for your support x
