Most people with Apert syndrome will need surgery – or multiple surgeries – at some stage in their lives. These surgeries can range from life-saving to cosmetic but will usually happen during childhood. As part of my Living with Apert series, I wanted to talk more about some of the… Continue reading
Apert syndrome is a very rare condition and as we do every year, Elijah’s Hope is supporting Rare Disease Day. This year the theme is Research. You can read more about the theme on the official Rare Disease Day website Rare Disease Day takes place on the last day of February… Continue reading
When Elijah was blue-lighted to Bristol Children’s Hospital on Monday 17th November 2014, I never imagined that he would still be an in-patient 12 months later. If I thought that November was a long month, 2015 felt at times, like a lifetime. It’s only now, almost a year on from… Continue reading
“It’s rude to stare.” I bet most children hear this at some point in their early years because, in most cultures, staring is seen as rude. To be on the receiving end can make you feel uncomfortable and exposed, so good manners dictate that we keep our glances short. Why… Continue reading
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