Not long after his birth, Chris and Steph Churchill’s baby son Harry was diagnosed with the skin condition epidermyelitis bullosa—and yes, I had to look it up. It’s extremely rare, but essentially the sufferer’s skin is incredibly fragile, so much so that the simple act of being picked up would probably cause the skin to shred.
Chris and Steph knew there was a risk that a second child might also inherit the condition—one in four apparently— but if the odds seemed favourable, the reality must have been a devastating blow as baby Cody was born with the tell-tale blisters under his finger nails.
The pair apparently became known as the “butterfly brothers” because of the facial marks caused by the condition. Harry and Cody’s life expectancy was short, but the boys shared a unique bond and clearly enjoyed each other’s company. The respite care they received must have been an enormous help to the boys’ devoted parents, but the cruellest twist of all came earlier this year when Harry and Cody contracted flu and passed away—within two days of each other.
Emotive, heart-breaking, whatever adjective you choose, it’s impossible to imagine how the past few years have been for the Churchill’s. I suppose you never really know how you’re going to react to any particularly difficult situation until you’re faced with it—the overwhelming majority are fortunate that they never have to find out. Chris and Steph are inspirational people and they were blessed with two equally special boys who, in the couple’s words, are now together again.
Three years ago, I sold the first version of Desperately Seeking Susan Foreman to raise funds for Children in Need. Writing a book and handing over a cheque for one hundred and something pounds frankly seems pathetic given the fundraising efforts of others, but I’ve started a new project for 2014 and hopefully it will raise a bit more—otherwise it’ll have to be the shaved head and bath of baked beans!
Here is the book’s Facebook page link—and I think I already know the two brave and remarkable kids to whom the book will be dedicated.