Campbell Robert John Burns was born on 24th January 2012. He is absolutely gorgeous and loved so much by his Mum, Dad, big brother Daniel and big sister Holly.
When Campbell was nine weeks, he was diagnosed with Leigh’s Disease. The diagnosis came out of the blue – although little, he’d been putting weight on steadily and seemed fairly well up to that point.
The diagnosis was devastating. Leigh’s Disease is a rare metabolic disorder which affects the mitochondria in every cell in his body. It means Campbell cannot produce energy properly.
Ultimately, Leigh’s is untreatable and terminal. It means that Campbell’s life expectancy is extremely short. We don’t know how long he’ll be with us, but most children with Leigh’s do not live more than a couple of years.
Campbell is a treasured little boy and we are so grateful to have him in our lives, regardless of how brief a time that will be. We will pour a lifetime’s worth of love into the time we have him and, when he isn’t here, we’ll love him some more.
This blog is a record of Campbell’s experience and the experience of our family. I will update it when I can – it might not be every day as this is a bumpy journey that we are on. But, if you follow the blog, please don’t keep it to yourself. Get in touch, pass the blog address on – Leigh’s is so rare that any shared information might help other families (and us) cope.
Love Bekki and Mark xx
****UPDATE, October 2012. Campbell tragically lost his battle against Leigh’s Disease on 28th September 2012. He was brave right to the end, and passed away very peacefully, cuddled and held by his Mummy and Daddy. We were privileged to be his parents.****