Tuesday, 5 July 2011

What's in a Snowflake??

Many of us who have children with OI call them our snowflakes.  Sounds crazy, I know, but it sums up what OI is in a nutshell (or snowflake!)
Snowflakes are fragile, and every one is unique and different from the next.  The same applies to OI.
There are several types of OI, from mild to severe. OI is caused by a collagen disorder that impacts on many elements of health, including bones that can break from little or no apparent trauma.
Qasim has type III OI which is severe. But two kids with type III can have completely different signs of OI, fracture rates, levels of mobility, etc.
I'm a mum of a type III kid, and can handle him safely, but would never consider handling another OI child without being shown how that kid can be handled.

So that's the boring technical sciency stuff over and done with, now onto real life and fun!
Because our snowflakes are KIDS first and foremost. OI just adds a little spice along the way!

Sunday, 3 July 2011

Starting Our Blog

This is our first blog for Qasim's Story.
For those of you that don't know us, Qasim is 6 yrs old, going on 16!!
He has a rare genetic condition, Osteogenesis Imperfecta (OI), also known as brittle bone disease.
Our aim is to raise awareness of OI, because awareness does make a difference.

So far,our OI journey has been a roller coaster ride of sorts.  From being told Qasim would not survive birth (his OI was picked up in utero), to then having a life expectancy of 2 weeks being definate lows. The highs have been surviving the first year, taking his first independent step age 5 after surgery, and currently planning his first experience of school for this September.

I'm sure there will be loads to blog with this little guy's attitude!