Monday, 13 June 2016

Awareness, fun and support

By now, most of you will have had at least one tweet or FB message from me about Rare Chromosome Awareness Week.

Those who haven't, well, here's your chance to find out more !!

As you know, Peter has a rare chromo disorder.
It took many, many years  to find out where the problem was and many arguments, tantrums, tears to get us to that point.

July 1990 was when we first found out that Peter had "something" genetic going on. (it wasn't till many years later I found out these things had been noticed at Peter's first check, but we were never told)

The initial diagnosis was chucked in the fuckit bucket early on, but my correspondence (yes, this was the pre dark ages when t'internet didn't exist and FB and twitter didn't FB or tweet!!) - lead me to a lady called Edna Knight and a group called Unique

I remember the phone call to Edna well.
Me upset, her listening.
She said to me " Julie, whatever has happened with Peter, it's NOT your fault".
She explained that most times, things just happen and we have absolutely no control over them.

And so began a journey of learning about chromosomes, getting to know  people and getting (and hopefully learning to give) support to others.

I won't bore with all the details of our journey - but we've had conferences with our Unique Family, where I saw how much we were cared for and how much other families appreciated the care we gave.
One or two vivid memories - of meeting my friend Sue for the first time.
We had been e - mailing and were meeting up at the conference. I went round to her room to say hi, to find that she'd had a bit of a rough journey down.

So what does a girl do???
Tell her pal to sit down while she puts on the kettle and askes if she wants tea or coffee!!!!

Sue reckoned my bossiness was just what was needed at that time and our standing joke is "just how far will we go to meet up with People for e hot drink!!!"

Another memory was one evening sitting in the bar. We'd had a bite to eat and Lou and Paul went to reception to see what was going on. A family were there and Lou started to talk to the little girl (she was the one who had the chromo issues). The girl took Lou's hand and obviously wanted to go for a walk. Meanwhile, her brother was a bit worried about this - so Paul said "hey pal,we can't let those girls go off without us annoying them - come on let's do it".

The dad came into the bar and sat down with me - he asked if the red headed  girl and her brother were mine. I automatically started to apologise, thinking something had happened. He laughed and said no and told me what had gone on. He thought it was great that a couple of older kids had been so kind to his children

So - Unique, well. what do they actually do?

They have a database of genetic abnormalities that they can reference.
They put families in touch with each other for support.
They have written info leaflets on the more common rare disorders.
They help with genetic research - helping find people they know who may want to be part of the research.

And, with the help of some funding, they organise conferences and family days.

We had one this weekend in Glasgow.
Just getting together, chatting to people, making new friends, catching up with old ones and a bit of food in between.

And we find that while there are vast differences in our children's problems, they are actually more alike than we realise.

We also compare notes on our holidays - our specialty is Disney!!
And these are two of n my fav pics from our holiday in January - opening the park with our new friend Sienna

So now, what i'm asking ,would you care to pop by our website

Join us on tweet


or pop over to our FB page

   Unique - Rare Chromosome Disorder Support Group.

We'd love to meet you.

And please - pass the message on!


  1. This could be my daughter too, so I really appreciate the information and links x

  2. It's a pleasure passing on the info.