My godson, Jude, was diagnosed with Schinzel- Giedion Syndrome shortly after he was born in July 2018. It is an extremely rare condition and means he is almost completely blind, deaf and has limited neurological functions. It is a life limiting condition and brings many challenges for day to day life, which is hard for the whole family. The SGS charity was set up by Judes Mummy along with other SGS parents to try and improve research and offer support to those living with this rare disorder. This is going to be a tough one for me but nothing compared to the sheer bravery and strength of Jude. 💙

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