“He really keeps us on our toes but he always has a smile on his face no matter the challenges he’s faced with.”

A message from Evan’s family:

Evan was diagnosed with KIF1A in May this year after a lot of tests, he’s been so brave and been put through it. It was scary at first as life would look a lot different to how we thought it would but we are lucky as Evan is so happy, cheeky and energetic. He really keeps us on our toes but he always has a smile on his face no matter the challenges he’s faced with.

Evan has a younger brother and he takes the role of big brother very seriously, he loves to chase his brother now they can both crawl and loves to make him laugh. 

We’ve spent a lot of time in hospitals having various tests and although these are stressful Evan is so resilient and somehow is back to his old self quite quickly. He’s learning new things every day and although he is behind his peers he always tries his hardest. Evan isn’t able to speak but has found a way to communicate with us and knows exactly how to get us to do what he needs/wants. 

Evan struggles with walking and can only manage 2 or 3 steps before falling but is able to crawl and climb, he does fall a lot but always picks himself up. He is so determined and we are so proud of him for that. 

Being Evans parent is often difficult and can be emotional but worth every day we get with him. He brings so much joy to our lives.

Comments

  1. 1
    Micha on August 1, 2024

    Amazing little boy with two amazing parents who hurdle every obstacle they need to, to give the light of their life (well, one of!) everything he could ever need.

    The happiest little boy ❤️

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