Several months back I met a kind woman named Kristen Gray at a birthday dinner for a mutual friend. At the time I had no idea about the nightmare that she and her family were going through. I was taken aback to learn that both of her daughters, Charlotte age 4 and Gwenyth age 2, were diagnosed in March with a rare and fatal disorder called late infantile batten disease CLN6. Batten disease is a really rare neurodegenerative disorder that begins in early childhood and will soon rob these girls of their eyesight, motor skills, ability to walk, talk and function normally. This terrible disease has no cure and typically children die between the ages of 6-12. The thought of this local family losing both of their precious babies to this horrific disease absolutely broke my heart and as soon as I heard I wanted to get involved and help in anyway that I could. A couple weeks ago I photographed their family for a writeup that was featured in People Magazine (see below). Charlotte and Gwenyth were incredibly sweet girls with a beautiful energy and spirit. I am joining in the fight to help save Charlotte and Gwenyth Gray and raise awareness to cure batten. Please consider contributing to their cause and please help spread the word. They are in a race against time to get the funding they need save their little girls. If you wish to make a donation, please click here (curebatten.org). And if you would like to view their video which further explains their mission and their story, click here (https://vimeo.com/129076730).
One thought on “Fighting for their lives.”
Beautiful photos, beautiful family. We as their community need to do all that we can to help. Your photographs helped capture their spirit, and love – and most importantly, have been used to spread their story.
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