World Smith Magenis Syndrome Day is November 17th. The 17th day of the 11th month, representing the fact that SMS is a deletion on chromosome17 at point 11.2.
(Yes i know it's January but i am behind with my posts like in a BIG WAY!)
And just to add to the excitement of the day, Team George were in possession of 'GENNY BEAR'!
The famous SMS teddy, Genny Bear, was in the middle of a fundraising and awareness raising tour of the UK. Starting in Scotland and travelling south stopping at SMS homes on the way she had now reached the Midlands and was currently residing with Team George!
And so in honour of auspicious guests and dates we decided to have a party! A RAINBOW PARTY!
We wanted to celebrate the colour that our extra special children bring to our lives. skies are never dull with SMS along for the ride and we do get magic in bundles along with all the challenges.
And so balloon rainbows were made and rainbow feasts were prepared.
Hand -made cake stands were created and muffins iced.
Rainbow sweets were arranged and pots of gold created.
And then my SMS family and friends began to arrive!
And the house became full of noise, mayhem, music, play, laughter and chaos!
Thank you to all my SMS family who mean the world to me and who truly understand the roller coaster extreme ride we are on and the rainbow colour of our days. And thank you as well to all my friends who cannot truly understand but who walk this path with us anyway, giving us love, support and understanding all the way! Our life is richer for all of you. xxx
We had an awesome time and hey we even made the local papers!
|My beautiful Tilly and her friend Christopher who also has SMS. Chris lives minutes away from us...how amazing is that considering there are only about 600 cases of SMS in the world!|