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Friday, 27 March 2015

WIT mama Friday: Batten disease


As someone who defined herself as a not "baby person" (and in many ways continues to do so), prior to having Greta I remember feeling secretly sceptical about other mother's descriptions of motherhood: about how it changes your life, about how you experience selfless love, and how becoming a mother connects you to other women on a whole new level.

And then you become a mother, and all of the above becomes so deeply true; and not only do you understand all of those feeling, but when another mother goes through something painful, like the illness or death of a child, you can feel that pain too. It doesn't matter if you've never met that mother before, or if she lives on the other side of the world. You are a mother too, and now you know how crippling it can be to fear that your child might fall ill, or even die.

On my birthday I had a long catch up chat on the phone with one of my best friends - she told me how that day she'd been photographing a mother and daughter for The Grace Tales. The mother, Peta, has a 5 year old daughter, Mia, who up to the age of two and half was a happy little girl, but was then diagnosed with a rare and fatal disease called Batten disease. Batten disease, or late infantile NCL, is a very rare degenerative disease, which is fatal and will rob Mia of her ability to walk, talk and see and will eventually take her life. Julie told me that on the day she asked Peta if she thought Mia was going to smile for a photograph - Peta said that they could try but it was hard to predict. 

The next day, as I was flicking through my Instagram account I stumbled on this shot on Julie's account and I can't really describe the sadness that I felt, and that I still feel today as I write this post. If you are a parent, you will feel that same heartbreak too.


Georgie Abay wrote a beautiful piece alongside Julie's photos on her website The Grace Tales- you can read it here. The one thing I wanted to invite all WIT mothers to do on this very special WIT mama Friday, is to join me on National Batten Disease Awareness Day on March 31 2015 to support Peta and Mia on the Bounce4Batten campaign. It’s easy – and fun too. Post a photo of your little ones (and yourself if you’re in the mood for jumping!) bouncing up and down to support the cause. With your photo, just include the hashtag #bounce4batten and follow @bounce4batten. 

There are so many tragedies happening around the world right now, my thoughts are also with the parents of all the children on the Barcellona flight that went down on Tuesday... if there's something we can do to help, in any of these sad events, we should at least try.

Love
mum Laura x

3 comments:

Bow Street said...

That is so tragic :( as a new mum I definitely relate to those feelings. I can't even imagine the pain and sadness that Peta must be feeling. Meera x

Sheryl Mackenzie said...

Sad to see that 3 people have marked the post as a fail. human race never fails to shock thats for sure

espritavivre.com said...

I'm struggling as well now that I'm a mother and are weeks I constantly think to those moms with babies on that plane....

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