Kian’s Story

My SWAN is my little solider Kian. He is 5 now and suspicions of a genetic disorder came when he was roughly 18 months old.

I had loads of problems with my pregnancy and he had starved for 4 weeks before he was born at 32 weeks. He had quite a few problems whilst in neonates and they discovered he had two holes in his heart. Apart from developmental delay, up until 18 months things seemed OK. Then he had trouble swallowing and the doctors found he was hypotonic too.  Over the years he has been diagnosed with GDD, hypotonia, microphaely, Autism, ADHD, retinal cavernous haemangioma (another rare condition left him blind in left eye), investigations into why his sugars keep randomly dropping and just recently vasculitis on his brain (which of course isn’t as straight forward as it would be).

We’re always looking for stories – if you’d like to share yours please email us: [email protected].

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