Hello world!

While I have been reluctant, my sister has been insistent. And she has finally won the battle.

I think it will be a positive thing, but I think I will need a bit of a shift in thinking to really wrap my head around ‘really’ being online, as opposed to just messing about on Facebook.

So, what am I doing here? I feel a bit like I should be writing a mission statement!

My name is Jennie, I am 27 and have two children, Liam (2 years 8 months) and Ezri (9 months).

My wonderful son Liam has a rare genetic condition called Spondylmetaphyseal Dysplasia. It’s one of those one-in-a-million type of things. Very little seems to be known about it, and it feels like even less information is available to the public. So what I am hoping is to be able to share what we can about Liam, his condition, and our lives, and maybe even find someone else in some other corner of the world who knows what I am on about!

We’re still trying to get some kind of understanding about what this really means for Liam, and ensure we support him in every way we can.

And I hope you’ll join us for the experience.