Tag Archives: SWAN UK

To the parent of a newly undiagnosed child…

I remember the start of our journey of ‘What…? Why…?’ with Alex very clearly, though I don’t like to think of it often. It makes me go cold. Want to cry. You never think you ask for much when you … Continue reading

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On how life is just one big Uncertainty. Which isn’t always ok…

I think what ‘undiagnosed’ means to me is… uncertainty. Our whole life is suddenly uncertain. When your children are born you only then realise how fragile you are and how vulnerable you have suddenly become… and yet within that you … Continue reading

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A quick letter to our MP – to ask for some cross party co-operation

Dear David I know we have corresponded previously on our son, but today I am writing to you as my MP to ask you to join the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions. Rare, genetic … Continue reading

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That DDD study

‘I am writing with news that the genetic tests undertaken… for your child have identified a possible cause for the developmental difficulties…’ You’ve maybe noticed I’ve been quiet with the words of late. This is why. The moment the letter … Continue reading

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Guest blog from Emma

I was talking to Emma about a piece I was writing for Undiagnosed Day. ‘Does it mention me? You know, you always tell me how well I’m doing?’ I laughed, and told her she was coping well with the whole … Continue reading

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What’s Wrong With Him?

‘So, what’s wrong with him?’ I am wrong footed for a second.  ‘Er, nothing, he’s perfect?’ I think.  But I know what they mean, understand what they are after.  A simple label to explain why Alex is the way he … Continue reading

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A life/ life balance

Something we don’t talk about …that having children has both its ups and its down-sides. I’m also not just-saying-this when I say the ups far outweigh the downs.  I realise these are clichés, but they are clichés for a reason… … Continue reading

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