In the previous few years I've shared a few social media posts about #RareDiseaseDay
but this year what started out as a tiny idea quickly grew and grew into the largest photo-shoot project I've ever created, with support from local media, municipalities and associations.
It partly stems from when I was in my early twenties when I volunteered every Saturday for an association that looked after kids with special needs so for one day a week their brothers and sisters could enjoy some special time with their parents when they didn't need to think of medications, hospital appointments or the routines imposed by having a poorly or differently abled sibling.
I decided to challenge myself, to create a style of photo-shoot I'd never done before. I wanted the portraits to be unusual, a break from a traditional smile at the camera type studio shoot. (I don't have a studio, any families I photograph are on location, at the beach, in the woodlands mainly here in Normandy, France). I wanted it to be colourful and most importantly really fun.
I didn't want to run into copyright issues with well known superhero characters so I chose not to use branded costumes. I simply chose capes and masks that feature colours used in the Rare Disease Organisation
logo and then also evolved their 'painted hand' branding too by supplying fluorescent make-up for the kids to use on the hands and faces, allowing them and their parents a fun behind-the-scenes moment together creating their own designs, to show off their inner warrior and fighter personalities. One toddler chose to put his own face make-up on. See if you can work out whose face paint is self drawn.
This was their turn to show what fighters they are. This was their moment to be in control : to choose the music, the colours of the capes, how they wanted to use the fluorescent make-up. To dance, to roar like lions, to be monsters, to punch the air, to jump, to fly through the air. Their daily lives are ordered by medication, routine and hospital appointments. This was their time to be free of all that, to enjoy just having fun, to forget about the health issues.
The aim was show their personalities and identities, that they are superheros, not labelled by their illnesses.
Their parents have shared with me the names of their health issues, often numerous but I've purposefully not included any of this information with their pictures because they are Neo, Anna-Lysa, Elisa, Gabriel, Mathys, ...not an illness.
Some wanted Mum or Dad to join in, one family brought their gorgeous dog who wore a cape and mask (not for long) to join in. Some wanted photos with their sibling. Everything they wanted to do was fine with me. It was their photo-shoot. Some wore T-shirts for the their rare disease's association. A handful of adults participated, either asking to showcase their rare disease or their parents contacted me explaining their conditions affected them greatly and they thought they might enjoy it. I refused no one.
Over half of the images are the siblings of those suffering with health issues. I invited them too because, to me, they are superheroes as well. The illness of their brother or sister affects their lives every day
, with parents away at hospitals with their siblings and all the emotions that having a sibling who is ill and even with shortened life expectancy.
I was originally going to just post one image for each child but there are too many pictures that I love so there are at least two of each of the Superhero kids on this page.
I'd like to take the opportunity to thank the Mayor of Percy-en-Normandie
Charly Varin who enthusiastically got behind my project ideas by immediately offering me the use, for free, of the town's theatre stage to carry out the photo-shoots and who then suggested that the images become a photo exhibition to be displayed in April. All the parents, bar none, are happy for their children to appear and they will all be invited to the exhibition opening.
I can't tell you how enriching the photo-shoots were for me. I was expecting to enjoy the felling of giving my time for deserving families but I've been blown away but what I've learnt about these families, whose lives have taken an unexpected turn, how they've adapted and how they'd like to raise awareness to help other families like themselves. Rare illnesses can be debilitating for the person involved, restricting their childhoods but also that of their siblings. I can say from personal experience how unexpected health issues can changes lives in an instant.
Here are the Superheroes...
And yes, just for fun as I'm not often in front of a camera after the last photo-shoot had finished I let me daughter (who was my fabulous assistant for the whole three days) go wild and do me a full warrior make-up so yes, this is me...