Cure Rett | Behind the Scenes

I’m going to be honest, I hadn’t heard of Rett Syndrome until I started reading Elizabeth Halford’s blog a few years ago.

Her gorgeous daughter Gracie was diagnosed with Rett Syndrome at only 13 months old.

Rett Syndrome is caused by a random genetic mutation on the x-chromosome that can occur in any boy or girl. It becomes apparent between the age of 6 months and 2 years. Boys usually die within their first year. Girls go through a period of regression where they lose the ability to walk, speak, use their hands, and often to eat properly. Seizures can develop as well as breathing problems, scoliosis (curvature of the spine), gut failure and even premature sudden death.  

{Image: Gracie May Photography}

Elizabeth and Kori are hosting Picture the Hope Photography Tour with Gracie May Photography and Cure Rett. They are touring the UK to provide photo shoots to girls with Rett Syndrome free of charge.  Families receive a free session for their girls who may never be photographed otherwise.  They also receive a pack of awareness cards to foster understanding about their girl and Rett Syndrome and an infographic telling their daughter’s story to the world.

I was super excited when Elizabeth asked if I would host the Edinburgh portion of the tour.  Not only did I get to spend the day with 2 fantastic ladies, but I got to meet some amazing new families and learn more about Rett too.  

I thought I’d share some ‘behind the scenes’ images I shot through out the day so you could see what we got up too.

{Image: Gracie May Photography}

Ruby was there too of course!  She loved meeting all the other families too. 

“Girls and women with Rett are known for their fantastic ability to eye point to the things they want. Vikki simply wouldn’t look at me and to the untrained eye, may seem to have just been disconnected or -ya know- not there. I could tell that Vikki was eyeballing a bottle of whisky which was left in the studio so when I picked it up, she held her gaze and I got the shot I was after. Never underestimate a teenager with Rett syndrome. Vikki was every bit as cheeky as any other 13 year old may be about a bottle of booze.” – Elizabeth Halford

Ruby hard at work…

Thank you to everyone who helped out with a wonderful weekend! A special thanks to Robbie Smith who allowed us to use the studio too.  It was so lovely to be part of such a good cause.  I loved meeting you all and I hope to see you all again in the future! 

{Image: Gracie May Photography}

To find out more about Rett Syndrome click here: Cure Rett
If you would like to make a donation, or purchase some gorgeous Cure Rett goodies then you can pop to the gift shop here: Gift Shop.

Zoe xo

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