Captain Endurance and the Imperturbable Girls

I have to admit, I’m not really up on my superheroes. I understand things have moved on a bit from Thundercats (I wasn’t allowed to watch He-Man and the Masters of the Universe because it was on ITV and therefore infra dig). I’m painfully aware of the PJ Masks, thanks to my six-year-old and YouTube, … Continue reading Captain Endurance and the Imperturbable Girls

Misfit

Is it just me? Every time I hear or see the phrase ‘Dress like a detective’ (that’s every day this month then, as I’ve been doing the SWAN UK Instagram Challenge), I want to sing it to the tune of ‘Walk like an Egyptian’. No? Just me then. That’s okay, I’m used to not fitting … Continue reading Misfit

My second family

I don’t know about you, but I’m secretly glad the school holidays are over. Not because I don’t love being with my kids (honest!). And certainly not because I don’t love the occasional lie-ins, opportunistic ice creams, lazy days in the garden and not having to make packed lunches (the smell of Branston Pickle just … Continue reading My second family

Medicine

I thought that schools were getting more secular these days … until every morning of the Easter holidays being woken by my five-year old plaintively asking, ‘Mummy, why did Jesus have to die?’ ‘Why do you ask that darling?’ ‘That’s what it said on the Whiteboard.’ The Whiteboard (capital W intentional) seems to be a … Continue reading Medicine

That was then and this is now

One crisp morning when Benjamin was in the Sick Kids I popped out to the corner shop for a sausage roll and a breath of fresh air (shocking, I know, but in my defence Benjamin was asleep and there are only so many egg sandwiches from the WRVS café one can eat). I passed a … Continue reading That was then and this is now

Bigger, better, bolder

April 29th 2016 is the fourth annual Undiagnosed Children’s Day, and it promises to be bigger than ever. It’s the third UCD since our own undiagnosed child, Benjamin, was born, and only the second since we found out that Undiagnosed Children’s Day and the initiative for undiagnosed children, SWAN UK, existed. A fitting time to … Continue reading Bigger, better, bolder

When does rare not mean rare?

When it’s Rare Disease Day! Today, February 29th (the rarest day in the year) is Rare Disease Day 2016. A rare disease is defined by the EU as one that affects fewer than one in 2,000 people. But, add together all those rare diseases and one in 17 people – 3.5 million in the UK … Continue reading When does rare not mean rare?

What should I say? (On your second birthday)

What should I say, Benjamin, that I didn't say this time last year? What can I report? How have you changed? I remember the day of your birth so clearly: the turmoil, the fear, the sheer, sheer joy of holding you close and knowing that we had made the right choice. I remember your first … Continue reading What should I say? (On your second birthday)

No idea (an open letter to my MP)

Dear Mr Kerevan, Re: All party parliamentary group on rare, genetic and undiagnosed conditions I would like to introduce you to my son, Benjamin. Here he is enjoying some of our beautiful East Lothian sunshine. He is nearly two years old. Benjamin is thought to have a rare, undiagnosed, genetic disorder, which prevents his brain … Continue reading No idea (an open letter to my MP)