My son was just 21 months when we had our first appointment with a geneticist back in September 2010.
I certainly don’t remember any professional tell us that our child had an undiagnosed condition.
I do remember words like genetic testing, rare condition, and microarray.
I also remember asking was there anywhere we could turn to for advice and support and the geneticist looking at us quite blankly.
We left that first appointment without even a leaflet to read.
Shortly afterwards, I set about googling the various terms I mentioned above and discovered Unique – the Rare Chromosome Disorder Charity. Click here for more information.
I made a call to them and a very helpful member of staff advised me that yes we could join but that the majority of their families had a diagnosis of a rare chromosome disorder.
I joined their Facebook group and ‘met’ a lot of very helpful families but I still had the sense of not really fitting in.
We then heard through Unique about a new project being set up by Rare Disease UK which would be called SWAN UK – Syndromes Without A Name.
It was aimed at supporting families of children who did not have a diagnosis for their disability or condition. Click here to find out more.
I emailed their co-ordinator Lauren that very same day. [email protected]
Within a very short space of time I was put in touch with another family with a child with an undiagnosed condition and we began to chat via Facebook.
With it my sense of belonging, my knowledge, my network and my number of friends grew with it.
At the same time the loneliness, the despair, the sense of hopelessness diminished.
Over the past 6 years it has been amazing to watch SWAN UK grow in to a nationwide community of families supporting each other through our undiagnosed journey and a charity it its own right.
We’ve made online and real life friendships.
There have been get togethers, weekends away, family fun days, information days, conferences, leaflets handed out, posters posted and fundraising done.
I don’t think it’s overly dramatic to say I wouldn’t be in the good place I was in if it wasn’t for the support that I and my family have received from SWAN UK over the years.
So on this 5th Undiagnosed Children’s Day I would like to say a massive thank you to the undiagnosed community and encourage anyone with a child who is undergoing genetic testing to get in touch.
You won’t regret it!
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