There is no preparation for being told your child has no future

A mother whose daughter has a fatal and incurable disease has opened up about what it's like to live with a dying child.

Peta Murchison, a mother from Sydney's northern beaches, gave hundreds of people a glimpse into her 'weird universe' at TedX at the Opera House in Sydney this week.

'I am a mother of two; Toby is 4 and likes Lego, and jumping off things. My daughter Mia is 6 and likes warm baths, horse riding and hugs,' Ms Murchison started.

'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.’...

But at the age of three, when the family was living in Singapore, she suffered her first seizure.

At first she was diagnosed with epilepsy, but the seizures started to become more regular.

Her language and memory deteriorated, and she began to suffer frequent falls.

In 2013, she was finally diagnosed with batten disease at Sydney Children's Hospital in Randwick.

'There is no preparation for being told your child has no future,' Ms Murchison said.

Breakthroughs in enzyme and gene therapy are too late for their daughter, Ms Murchison said.

'So giving up the fight for her life has been replaced with giving her the best life.'

The family moved back to Sydney after Mia's diagnoses and immediately set about finding a school for her…

Now, at 6-years-old, Mia is wheelchair bound and can no longer hug her mother. Her seizures are constant.

But Ms Murchison said she has come accept there is no cure for her daughter.

‘So when I put flowers in my daughter’s hair and friends and family come to say goodbye,’ she told the audience,

‘I will remember the human capacity for hope is so strong that even when you’re told there is no hope, somehow you still manage to find it." 

Read more: http://www.dailymail.co.uk/news/article-3613675/Sydney-mother-Peta-Murchison-opens-living-dying-child.html#ixzz4CnoauA4I

See:  http://childnervoussystem.blogspot.com/2015/07/whole-exome-sequencing-revisited.html