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A poem for Undiagnosed Children's Day

Last Reviewed 28/04/2017

By swan uk member, jess bowler

What is the Definition of undiagnosed?

I hear you say: 'but she is diagnosed with Global Developmental Delay': 

'Don't worry, she'll catch up, she's only got a bit of delay.'

We listen, we hope, we pray to everything you say and we hope that one day it really will just go away.

Global Developmental delay is more than what it seems, this umbrella term is not accurate on what it really means.

I have more than just a little delay, my body fails to meet its mile stones in every single way.

Global Developmental Delay is just one part of my make up, the nasty little gene that's had a funny shake up.

But I hear you say, 'she has epilepsy so she is diagnosed in a way.'

'She's only young, don't worry, she'll grow out of them in a hurry!'

We listen, we hope, we pray to everything you say and we hope that one day it really will just go away.

Epilepsy is a life threatening neurological condition, that needs more research - so sign the petition!

I have fought long and hard to fight my seizures, they have even stopped me breathing the cheeky little bleeders!

Seizures are another part of my make up, caused by this nasty little gene that had a funny shake up!

But I hear you say, 'she has a sleep disorder anyway.'

'She's only little she'll get into a routine, she can't be up all night, that's not really what you mean.' 

We listen, we hope we pray to everything you say and we hope that one day it really will go away!

Sleep disorders aren't just when babies wake in the night, they often stop breathing and wake in a fright!

I can wake up to 16 times in the night, because of my movements and breathing - I can't be left out of sight!

Sleep disorder is another part of my make up, caused by this nasty little gene that had a funny little shake up.

The inconclusive list above are all just part of an underlying condition that would otherwise be known as a diagnosis!

Thousands of children each year have a number of conditions but are left without rhyme or reason as to why they have the problems that they encounter on a day to day basis.

There is a fantastic network called SWAN UK (syndromes without a name) who support each and everyone of us through our individual battles. Together we will unite to raise awareness for undiagnosed children and their families! 

Undiagnosed Children's Day: Friday 28 April 2017!

TO FIND OUT ABOUT JOINING SWAN UK VISIT: UNDIAGNOSED.ORG.UK/JOIN

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