Tag Archives: undiagnosed

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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Today in Westminster…

So today I went to Westminster to listen to the APPG on Rare, Genetic and Undiagnosed Conditions. They were talking today about undiagnosed conditions and the impact of DNA sequencing. As this has happened to Alex, I – somewhat nervously … 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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Was that the post…?

Close up on the inside of a front door – specifically the letter box. As we pull back an extremely thick A4 brown envelope is pushed through the letter box. Switch back to close up on the letter as it … Continue reading

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Hearts full of thank you…

On the last really hot day of this month, whilst Alex and his respite family went off to the beach, Emma decided she’d like to go to the cinema.  To watch Frozen.  Again. Luckily for her, I didn’t mind.  We’ve … Continue reading

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