Mum Shares The Heartbreak Of Raising A Child With A Fatal Disease

Peta Murchison's daughter has Batten disease.

30/05/2016 14:55 | Updated 30 May 2016

A mum has spoken of the heartbreak of knowing your child has not got long to live.

Peta Murchison's six-year-old daughter Mia has a fatal condition called late infantile Batten disease, - a rare degenerative condition, which causes severe epileptic seizures and the deterioration of speech, sight and mobility. 

"When my daughter dies I will wash her and dress her and put flowers in her hair," the 36-year-old mum-of-two, from Sydney, said in a speech at TedX Sydney.

"Living in grief means life is more illuminating."

Approximately seven to 10 children are diagnosed with a late infantile form of Batten disease (also known as Neuronal Ceroid Lipofuscinoses) each year, meaning there are probably between 30 and 50 affected children in the UK, according to the Batten Disease Family Association.

Mia was born in Dublin in 2009 and was a "healthy robust baby".

"Mia was an inquisitive, joyful baby and toddler, full of love and a little bit of mischief too,' according to a website set up by the family to raise awareness of Batten disease.

She suffered her first seizure in August 2012, when she was three years old. Nine months later Mia was diagnosed with  Batten disease or late infantile NCL. 

"In a few years it will take her life," the family wrote. "Like all children Mia deserves love, joy and happiness."

Murchison, who is also mum to four-year-old Toby, shared some of the thoughts that crossed her mind before she went on stage to share her story at TedX, Sydney.

"I told Toby and Mia how nervous I was going out onto the stage at the Opera House," she wrote on Facebook.

"My heart was pounding so loudly. I sat back stage and held a photo of them both before my talk and tried to take some deep breaths and just listen to my heart thumping in my throat and ears.

"But once I walked out onto the stage I felt calm and just started speaking to everyone. Toby's response 'I want to be on the stage one day'."

Mia now can’t walk, talk or feed herself and has become legally blind.

There is currently no cure for the disease.

"There is no preparation for being told your child has no future," Murchison said according to the Daily Mail.

"Giving up the fight for her life has been replaced with giving her the best life.

"So when I put flowers in my daughter’s hair and friends and family come to say goodbye.

"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."

Later Murchinson told Fairfax Media that she and her husband Hamish wanted people to know that her talk was the "PG version of life" with a dying child. It didn't include their bleakest and darkest moments.

To raise awareness of the condition, the Murchisons have launched a campaign called Bounce4Batten urging people to post photos of them bouncing - in the pool, in the air, on a trampoline or a bed. 

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