Hello world!

26 Apr

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.

 

Hear no Evil

8 Responses to “Hello world!”

  1. fionamoore May 7, 2012 at 9:30 pm #

    wooooooooooo

    • Jen May 8, 2012 at 8:31 pm #

      Yeah yeah you got me started… let’s see how long it lasts!

  2. Network Geek May 7, 2012 at 9:35 pm #

    Welcome to the wonderful world of blogging! Trust your sister; you’ll like it more than you think, once you get rolling with it.

    • Jen May 8, 2012 at 8:32 pm #

      Aaaww thanks! Chances are I’ll get addicted haha

  3. Veronica May 7, 2012 at 9:40 pm #

    I’m really interested to hear more of your story!

    • Jen May 8, 2012 at 8:33 pm #

      It might take a while for me to get the hang of this but I’ll try to maintain your interest :)

  4. Emilie October 30, 2012 at 10:18 pm #

    Hi Jen! I don’t know how to start this, but hello, I am a 20 year old college student in Alaska who also has Spondylmetaphyseal Dysplasia. Small world huh?

    • Gertie April 23, 2017 at 12:03 pm #

      Nydelige kjbøkenkilder, jeg blir helt gal av sÃ¥nne bilder.Er ikke fornøyd med mitt kjøkken, og de kjøkkenbildene er 'to die for'….Jeg har sett referanser til Det Mondæne Skur i de danske boligbladene, og det ser jo helt fantastisk ut.Skulle gjerne vært der ja…

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