Lily - her brother's super hero

Updated: Nov 30, 2020


We were going to write about our journey but thought we might do something a little different. So we are going to write about how Harry, Lily’s older brother see’s her.

Harry is 10 years old and Lily is 8 years old. Lily has an ultra rare genetic disease called Acrodysostosis, and the reason I wanted to talk about Harry is because of a few wonderful observations he has made about his sister who he adores. Harry thinks that Lily might be more evolved than other people. And I am going to tell you some of the reasons he thinks this.

Firstly: Lily struggles with speech and language but Harry doesn’t see this as a disability, as she can communicate very well in loads of other ways. He thinks that as humans may not need to talk eventually and only communicate with their eyes and minds etc. She is actually ahead of her time. Secondly: Lily has very small hands with short fingers. And Harry has thought about this and can see that it has it’s advantages, Her grip is pretty powerful and the shortness gives her fingers strength, which obviously allows her to defend herself from things like flesh eating zombies. Thirdly, Lily’s bones are all shaped differently to other humans, which has made Harry think she must have some sort of super power. Which must be true as Lily like all super heroes has a Genetic Mutation.

As a parent you worry so much and stress about the future especially when you dont what the future holds, but Harry has made me see Lily in an entirely different way and I love that.

Thank you for reading Harry’s story





#raredisease #charity #research

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