This is a mini journal of life with my 13 year old son, Ben. I’m starting this now and hoping to capture the essence of our 2022 school summer holiday.
I love photography and the challenge of posting once a day, I did once manage 100 consecutive days but that was more than 10 years ago..
Ben h Read more...

This is a mini journal of life with my 13 year old son, Ben. I’m starting this now and hoping to capture the essence of our 2022 school summer holiday.
I love photography and the challenge of posting once a day, I did once manage 100 consecutive days but that was more than 10 years ago..
Ben has a rare KCNQ2 genetic mutation that caused neonatal epilepsy; autism; developmental and physical delays.. hence the journal title. The Haiku element is to persuade me to ‘keep it brief’ but it’s also a challenge for me to write in a way I have never attempted before.
I want to capture Ben’s achievements but I’m also here to highlight elements of the parent carer journey that are intertwined :-)

More info on KCNQ2 epilepsy can be found at www.kcnq2cure.org

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