I hope that you enjoy following our journey of life with Smith-Magenis Syndrome.
I hope that we will inspire you, entertain you and at times move you to tears....
I hope you learn that it is not only our daughter who is truly inspirational through her determination and infectious personality despite the difficulties she has, but that our sons are also immensley inspiring through the love, affection, fierce protection and patience they show for their sister through the good, the bad and the downright ugly days...


Sunday, 10 April 2011

A quick update!!

I just wanted to quickly share an experience I had yesterday.
We were walking around the toy shop yesterday looking for a birthday present for a little girl who has the same syndrome as Grace. We were looking at the rows of toys - Pepper pig, Minnie Mouse, Handy Manny etc etc - Grace loved them all - pushing the buttons, watching the lights, listening to the music and sounds - all baby toys or toys for 3+ - so significantly younger than her almost 10 years of age - nothing new, not a concern -'appropriate age' for toys, development etc all went out the window years ago.

But then we passed an aisle with a poster of Justin Bieber and some of the Justin Bieber 'dolls' on the shelf, and she let out a squeal and suddenly she turned into a minature teenage groupie - " I love Justin Bieber!!" and she starts to sing "Baby, Baby". Memories of her at the Justin Bieber concert came flooding back, as she danced and sung throughout the entire show...
 In the short space of a few steps Grace we went from preschool toys to teenage groupie!! Oh the complexities of life with SMS!!

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