Exciting news

Sooo.....

Today I found out that the article written about me by my lovely geneticist is going to be published in the American Journal of Genetics, pretty exciting stuff really and I'm quite chuffed about the whole thing to be honest. It will raise more awareness about FOP.

I haven't read it yet but I'm sure it's great, geeky but great. A picture of my toes will be included which would be great if I'd known about this before going to the appointment!!!

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New Beginnings

Today we went and visited our good friends new baby, gosh he's so tiny at 4 days old and so cute! Love the fact that I had a hold for a good 10 mins with no problems but as soon as hubby held him he cracked it big time :) So nice to have a new little person around to help you remember the good things in life

Feeling hot hot hot......

It's so hot here now, 39 today although it only got to 37 something and 42 degrees is forecast for tomorrow, uggh revolting. Lucky for us we just upgraded our car to one that actually has airconditioning and isn't red, you;d be surprised how much of a difference this actually makes :)

We went to buy a wading pool today thinking it would be easy to pick one up for $30, wrong wrong wrong, Shops were either sold out, or they were very $$ so the idea was scrapped instead and replaced with a nice cool glass of strawberry-lime cider, much more satisfying and alot cheaper
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Where to start.....

What is this all about? Well lets see, where to start....

What is with the title? Obvious reasons include the fact I love the movie Alice in Wonderland, the other possible reason comes from my medical history where many doctors have seemed curious, puzzled, perplexed about me...

Let me explain.....

I have a condition called Fibro Dysplasia Ossificans Progressiva, lets call this FOP for short, I mean really it's such a mouth full and hard to remember even for people who have it. There are approximately 700 people worldwide with this condition and only 12 known cases in Australia making it extremely rare and unique

As with any rare condition it is complicated, difficult to explain, difficult to understand, and more. In very simple terms it causes bone to form in muscles, tendons, ligaments and other connective tissues basically my body is forming another skeleton, although I think 1 is enough!!

Hmm there is so much more to add but in the meantime, if you would like more information please visit the official FOP website www.ifopa.org

New beginnings

A place to write random thoughts and ideas, mad ramblings, ongoings and the like

Most will be complete madness, some funny, others sad