Let me explain Smith-Magenis Syndrome (SMS) through our logo; the Sun, Moon and Stars.
The sun and moon represents the body clock. In Smith-Magenis Syndrome the body clock, the circadian rhythm, is flipped. Our children naturally want to be awake at night and asleep during the day. We recognise that our children don’t have a sleep problem; they can sleep anytime, anywhere. It is those around them who have a problem with their sleep. Imagine having a bright and lively child awake in the small hours of the morning wanting to play and be active.
The jovial moon depicts the wonderful and endearing personalities that come with Smith-Magenis Syndrome: The bright smiles, the lighting of the way in darkness, that feeling of comfort and ease when you see the crescent moon. The white of the moon is associated with light, goodness, innocence and purity. All of these relate to the children with SMS. The crescent moon is laid back in the same way as our children are laid back in their attitude. Yet also it reflects the SMS face with the eyes and forehead set back and the chin becoming more pronounced.
But then there’s the dark side of the moon, the less pleasant more challenging, colder aspects. Within Smith-Magenis Syndrome these can manifest themselves as challenging behaviours, self-injury, aggression and destruction. There are also the many medical challenges to be faced, hidden from view but nevertheless there in the background.
With the warmth of the sun comes the affection. Inevitably they also want to be the centre of the universe as the sun is to our solar system. And when at the centre our children certainly shine. Yellow is the colour of sunshine and is associated with joy, happiness, intellect and energy which all our children show.
The seventeen solar flares and the eleven stars are significant in reminding us that Smith-Magenis Syndrome is a deletion or mutation on chromosome 17p11. This is also why we have the 17th November as our international awareness day.
The circle of stars within the blue surround? Well every child is their own individual star, shining brightly on their own and even more as a constellation with others. We have a circle of friends around our world making up our global SMS family. Blue is the colour of the sky and sea and is associated with depth and stability which our children need. It symbolises trust, loyalty, confidence and understanding.
There is nothing artificial with the Sun, Moon and Stars. These are all natural wonders that relate perfectly to our children with Smith-Magenis Syndrome. See them for what, or who, they are.
So when you look up to the sky, or see our logo, remember our story. If there clouds making it dark, never forget that the brightness of the sun, moon and stars are only temporarily obscured and waiting to re-emerge.