I'm sorry this is long, but please do take a little time out to read on... 

I have spent years trying to come up with something I could do to help raise money for the Lily Foundation. I wanted it to be something different, perhaps somehow linked to photography but something that would challenge and build me in some way. 
Well, it got sprang upon me just last week.

Since having the twins, I have felt a huge drop in confidence in my body image and difficulty accepting my new, (what I see as) imperfections.  I know deep in my heart that I am blessed to have my babies and that it is an incredible and wondrous thing that my body has done- carrying and growing those beautiful babies for 9 months and giving birth to them naturally. Yet still, the negative thoughts creep in as I avoid the mirror and dress covertly. 

So, when I heard on the Radio this week that an internationally renowned American Photographer Spencer Tunick was coming to
England, my ears pricked.  He achieved worldwide fame by getting thousands of people to take their clothes off in the name of art.   He is now coming to Hull to create another major piece of art commissioned for 2017.  So, myself and my friend Kerry, will be stripping off and joining and huge group of naked strangers in Hull City Centre in July this year, to take part in Spencer Tunick’s newest set of Group nude Photographs.

So bare with me whilst I explain how I am linking this to my beautiful nieces Lily and Willow and the Lily Foundation…

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Lily and Willow, have a rare life-limiting blood disorder called Leigh’s Disease which is a type of Mitachondrial Disease.  It prevents the body from producing energy for vital organs and muscles. 

Lily was diagnosed in 2011 when she was 2 ½. Prior to this she had seemed to be developing like any other child her age.  When she first started to walk unaided her parents noticed that things weren’t quite right. After she turned 2 their journey of uncertainty started as she became quite poorly and stopped walking due to stroke-like episodes. After 15months of scans she was finally diagnosed. 

Lily never regained the movement she had as a toddler, and is unable to
walk or stand up unaided- using a walking frame to help her get around at school. She takes Riboflavin every day to help boost her energy production and potentially even a cold could be a worry.

Lily, who is now 7 continues to be an inspiration… she never feels sorry
for herself, she just is herself.  She has a beautiful soul. She embodies
kindness and above all, my goodness she is funny… I mean proper ‘haha’ funny!!!
 She makes light of herself and never asks
‘Why Me’.  She has accepted herself and
her body’s limitations and simply makes the most of this world.  We could all learn from her, to find an inner peace and self-acceptance. 

Her sister Willow is 2 ½ .  Now she’s the cheeky one, so very sweet and
that smile will simply get her everywhere in life!!! Jamie and Chelly found out she too had Leigh’s disease very early on. As such they started her on the medication without delay.  She, therefore never had the mini-strokes and although she remains light for her age, she is otherwise developing physically at the same rate as other children.  The 2 girls have a wonderful bond as both sisters and friends and they are continually learning from each other in all sorts of ways. 

So, I guess my point is… Let us all accept ourselves for who we are and love and make the most of what we have been given.  Let us be kind to
ourselves and let us not judge others.  We are all beautiful, all worthy and all here to make the most of the hand we have been dealt.

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There are currently very few effective treatments and unfortunately there is no cure for Mitochondrial Disease.  There is still such a lot to learn about this rare disease.  Any money you can donate will enable doctors to get a better understanding of how mitochondria function. This will help identify new disease causing genes and improve the speed and accuracy of diagnosis. This will lead to the development of effective treatment options, techniques to prevent transmission and ultimately to find a cure. Your money will also help support all the
families out there who have little ones with this condition.  So please please do give, even if it’s just a pound.  It all helps make a difference.  

Thank you so much,

Vicki xxx