An Australian mother has spoken up about what it is like to live with a dying child.

During TedX at the Opera House in Sydney Peta Murchison bravely opened up to hundreds of people about her daughter Mia who is six years old and who has the rare degenerative Batten disease.

It has no cure.

Mia was born a seemingly healthy baby girl but by the time she was three she began to suffer with seizures.

Soon her language and memory were deteriorating and she began to fall quite often. 

The litle girl was finally daignosed with batten disease in 2013 and because there is no cure her Mother says, “Giving up the fight for her life has been replaced with giving her the best life.’


Following a struggle to get Mia into a big school community her family finally got their wish and now Mia has as regular a childhood as possible.

But the reality of living with a dying child is never far from Peta’s daily routine, Mia can no longer hug her Mum and she is wheelchair bound.

Peta says that she has even planned what she will do when the heartbreaking time for Mia to leave them arrives.

‘When my daughter dies I will wash her and dress her. I will put flowers in her hair. We will play music, light candles and hold her.’

Source The Daily Mail

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