Peta Murchison is about to face into the most difficult year of her life.
Her daughter Mia is about to turn to turn seven – an often fatal point for children like her.
That’s because Mia from Sydney has Neuronal Ceroid Lipofuscinoses. Also known as infantile Batten disease (LIBD), it’s a rare degenerative disease affecting about one in 100,000.
Like most kids with a rare condition, Mia’s diagnosis was slow and frustrating. It took a gene sequence to identify the condition that had robbed the previously healthy girl of the ability to talk, walk and see.
It’s cruel, it’s incurable, and it’s breaking her parents’ hearts.
To try and convey the tragic reality of living with a dying child, Mia’s mum Peta Murchison delivered a deeply touching talk at the recent TedX talks at Sydney’s Opera House.
The mother-of-two (36) was in tears by the end of her speech, and received a standing ovation.
“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,” she began.”
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.”
“I’ve just given you a tiny glimpse into the weird universe you find yourself living in when you are a parent with a dying child. The crazy things you have to contemplate when you are facing your worst fear every day.”
Little Mia was born in Dublin, where her parents were working. In 2012, the family moved from Ireland to Singapore, but it wasn’t long before they started worrying about their little girl.
The previously healthy toddler started becoming aggressive, lost confidence and stopped enjoying her ballet classes.
They began to wonder if the move from Dublin had been too much for her, or if they were doing something wrong as parents, but doctors continued to dismiss their concerns.
It wasn’t until Mia was three that she had a seizure. A month later, she had another, and then another. Before long, she was struggling to walk or talk, but competing diagnoses kept being thrown around, with no consensus.
The family flew back to Sydney to seek another opinion from the Sydney Children’s Hospital. Finally it was confirmed – Mia had Batten Disease, and the promising treatments were simply too late for the little girl.
But her parents are determined that she’ll enjoy the time she has left.
“There is no preparation for being told your child has no future,” Peta said. “We were so numb, so exhausted we couldn’t cry. Not then. It had been a long day, a long week, a long year. I crawled onto the bed with Mia and closed my eyes and held her. Her warm little body comforted me.”
Within a week, the family moved back home to Australia.
To raise awareness of the cruel disease that is slowly taking their child away from them, Peta and her husband Hamish launched a campaign called Bounce4Batten urging friends and family to post photos of them bouncing – in the pool, the air, on a trampoline, or a bed.
They don’t raise funds, preferring donors to give to the Batten Disease Support and Awareness Organisation.
These days, Mia is confined to a wheelchair, can’t walk, talk or feed herself. She has also become legally blind.
However, her hearing is good so she can still enjoy the music that she loves. She has weekly seizures and suffers from tremors and smaller seizures every day.
But her hearing is still there, and her face lights up at the noise of other children as she arrives at her school, which has been incredibly supportive.
“Kids hold Mia’s hand at school, they prop her head back up on her headrest when it falls off, they read to her, stand by her side and they laugh with her.”
Despite the heartbreak they face, Peta’s family are determined to stay positive for little Mia’s sake.
“Giving up the fight for her life has been replaced with giving her the best life,” said Peta.
“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.”
