Friday 24th April 2015 will be the third Undiagnosed Children’s Day and as the years go on this day means so much more to me and my family.
This is to raise awareness for SWAN UK (syndromes without a name) the charity in place to support families UK wide like ours, who are affected by these conditions and the word ‘undiagnosed
What is an undiagnosed child??
A child who is so complex but no doctor can explain ‘what is wrong with them’ a child that avoids ‘another’ bullet when ‘another’ test comes back unsolved.
How you ask??
If I had a penny for every time I’ve asked this question in the last 4 years and 8 months I would be a very rich lady.
Like most undiagnosed children, they are put through the hundreds of tests and investigations some intrusive, some completely unnecessary; some that just make me want to scream…….
Especially when the results come back as just ‘normal’.
What is normal??
🔹A child like mine can’t be having several seizures of sort a day but nothing untoward showing up on his brain scan surely…….. Yep……
🔹A child like mine can’t just stop breathing because it’s normal…… Yep……
🔹A child like mine can’t be almost five years old but stuck in the body and mind of a baby because it’s normal……. Yep……
🔹A child like mine can’t have so many health complications, be classed as having a life limiting life threatening condition because it’s normal…….. Yep……..
Normal…… Normal results. Now back in 2010, 2011 and most of 2012 this word normal, the phrase ‘Nothing Wrong’ made me jump with joy. “See; there’s nothing wrong with him” I’d say. Be delighted. But then reality set in. Ground hog day repeated and I needed answers.
Why? How? When?
Why was my child a poorly child?
Why can’t he walk?
Why is he in so much pain?
Why can’t he talk?
How can we make him better?
How can we make him talk?
How can we take his pain away?
How can we make him walk?
When will he sit up?
When he will be better?
When will he talk?
When will he walk?
When will he be…….. Normal????
How can my child be ‘Normal’ or Neuro-Typical as we call it these days when he can’t do any of the things all the other children can do??
From 2012 to now I still let him undergo all these intrusive investigations just in case. Ruling out most of the obvious syndromes, the agonising wait, the agonising hope, My husband on the other hand would rather not. But we agree to do it for the sake of our little boy. Our little Peter Pan.
What is a diagnosis; which once would have meant the world to me?? A name? A deletion or perhaps a duplication. A list of letters and numbers that wouldn’t necessarily mean all that much. Something so rare that nobody would give me much more information that I already know.
A diagnosis wouldn’t change our Dylan,
A diagnosis wouldn’t make our Dylan better.
A diagnosis would mean we wasn’t a SWAN anymore
We already have a life limiting label, we don’t need exacts……..
A diagnosis brings a prognosis and without one of these the world is our oyster. Our special little boy can continue defying all odds, the doctors and everyone else. He will continue surprising us with his strength and determination. He is our real life superstar.
There are thousands of undiagnosed children in the UK alone with approximately 6000 disabled children being born each year whom will remain undiagnosed and each one is an individual, special and unique and what makes them all alike is the community we belong to. SWAN UK. (Syndrome without a name). An extension of family. A huge and growing community of parents celebrating their children, supporting them in times of need or just when they need picking up. (We even offer fashion advise if it’s needed!!!) A place where we can talk to others who just ‘know’. Advise on many many things. There’s always a friend available 24/7 (as most of us SN parents don’t do sleep, sleep is for wimps you know lol!!)
Between us we make more sense than a lot of medical professionals!!!
And then there’s the team behind the scenes putting it all together. Thank you all!!
Undiagnosed Children’s Day is celebrated Nationally to raise and increase awareness for all of our special children with undiagnosed genetic conditions and to raise funds to support SWAN UK (syndromes without a name)
Across the country next week there will be undiagnosed awareness meet-ups withs lots of beautiful SWAN’s and I for one can’t wait to meet some new ones…..
The Sun is shining, bare arms are out! So please dig deep and as Mr Tesco’s says ‘every little helps’