Butterfly boys

Last week we learned of some devastating news. A young boy called Harry Churchill (almost 4) who went to Julia’s House had passed away. Then we heard two days later that his younger brother Cody (nearly 2) had also passed away. Both the boys had pneumonia.

Harry and Cody both had Epidermolysis Bullosa (EB), a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds. It is often said that people with EB have skin as delicate as a butterfly’s. Both boys also had a tracheotomy to help them breath.

When Samuel started at Julia’s House, he was often on session with Harry and then joined by Harry’s little brother Cody, before Harry left the pre-school sessions to start school.

Both the boys were very bright – it made me smile watching Harry show the carers how to use his iPad and both boys would always join in with all the songs – they knew all the actions. They were wonderful and brave little boys. Despite everything they had to go through each day they were always so happy and brought so much joy to so many people.

Losing these two amazing boys has broken so many hearts…sleep tight Harry and Cody. x

 

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