Peta describes her daughter, Mia, as gutsy, sweet, mischievous and delightful. She was a first child, first grandchild and big sister. Sadly, Mia died when she was only 9 years old. 

Here, Peta shares snippets from her journal, and memories of life with Mia and reflects on life now for herself and her family. 

I’d like to share a snippet of our experience with childhood dementia. It’s a journal entry from 2014 when my daughter Mia was 5 years old: 

‘We get asked a lot “How are you?" Or more specifically, “So how is Mia?" The answer changes depending on our day and what has been happening with seizures, school and sleep.

Mia's an amazing kid. She's gutsy, sweet, mischievous, delightful, courageous and determined. Her smile lights up my heart, Mia squeals and makes kissing sounds all the time, her laugh is hearty and full, and she gives the best hugs just like her dad. She enjoys playing with toys on her gym mats and will prefer to spin the wheels of a Tonka truck round and round, squeeze a squishy ball and shake her jingle bells over watching TV. She kicks her legs crazily in the bath and annoys the hell out of her little brother. One of my favourite things is watching the smile spread across her face and the big grin and her eyes light up when daddy walks in the door or her instantaneous laugh that erupts when her funny great Aunt arrives. 

Here comes the but ...

Mia doesn’t always respond; it feels like it’s getting harder to get a reaction. She’s away in her own little dream world more and more and becoming more passive. Mia’s regression is unrelenting, and I’m scared about having a completely passive child.

We have photos of Mia running last July and bouncing on a trampoline in August. Fourteen months later, she is in a wheelchair and can’t sit up in a bath unassisted. At Easter, Mia was saying ‘baby’, ‘Mia’, ‘more’ and ‘ma’. Six months on, we have no words. It feels like we're doing milestones in reverse and the vigour with which we started occupational therapy, floor time therapy, behaviour therapy, speech therapy, and vision therapy is sometimes waning. Possibly to the relief of some therapists. What’s the point? We are still focused and hopeful but there is some acceptance of the inevitable … this disease is devouring my daughter.’

Mia did become that passive child that I was so fearful of but she was still 150% Mia in heart and soul, so beautiful and so delicious to snuggle up with and hold and give her butterfly kisses. She was passive but there was connection, a more intuitive communication. We could mostly tell if she was in pain, uncomfortable or scared. Mia required 24-hour care and was completely vulnerable and dependent on us for all her needs. It was busy and all-consuming. I believe she also felt how loved she was. I hope she did. I hope that we did enough to keep her comfortable as she left our world.

On a winter morning in 2018, 6 years after her diagnosis, Mia died at home. She was 9 years old. Mia had childhood dementia caused by CLN2, late infantile Batten disease.

We’d celebrated our beautiful healthy baby’s arrival into the world, our first child, the first granddaughter for our family, first smiles, teeth, steps and words. Until, suddenly, we were no longer celebrating; thrown into the unknown abyss of a rare disease diagnosis with no safety harness and with no maps or guides to help us find semblance of what was up and down.

‘Childhood dementia' is a confronting term to hear, and in the same breath, it’s perfectly apt. The quirky names acquired by rare diseases provide little context for the suffering and obstacles. To encapsulate this in a name provides a context that seems important. I had years of explaining what our daughter’s condition was to blank faces with little to no understanding. Mostly I would use a roundabout explanation and say Mia was diagnosed with a neurodegenerative condition.

Many medical practitioners we met had never heard of Batten disease (the good ones googled it before we sat with them). We weren't supported to navigate the complex health and disability system with a looming deadline hanging over our family as we simultaneously tried to keep focused, manage family life, care, advocate and love each other surrounded by grief. It often felt like we’d landed in the too-hard basket and, on a weekly basis, I would be describing the condition to someone; shocked parents in the playground or to our GP.

In the years since Mia died, it is the small innocuous moments that surprise. The pretty dresses hanging in the shop front. The gaggle of girls cartwheeling confidently, skating and carrying their boards towards the water. (I’m not envious but curious of them). I enjoy seeing Mia’s friends growing up, they wave and smile. They’re in high-school now, I’m on the sidelines occasionally, a distant cheerleader.

Jasper, is our third child. I worry that when he is starting to think about having his own children things may not have progressed.

I wonder, when he’s an adult, will his doctors have clear policies and be educated to recommend genetic screening for his partner before they consider having a child? Could they fall through the gaps? What will be standard practice?

I will remember being with Mia during her last few weeks. It was relentless. A blur of life and day and night.

I will remember that her little brother, Toby, gave his doggie to Mia because we had lost her monkey.

I will remember all being together, Toby watching the Peter rabbit movie, a rambunctious 7 year old quietly rearranging the flowers that adorned the room and reading Mia a story.

I will remember that Mia brought us in tight as a family. We kept life as simple as we could. Life is so different now with nippers, swim squad, music ensembles and rugby camps.

I will remember leaning over my daughter, the tops of our heads gently kissing. I whispered “I’m so sorry my darling you didn’t get the life you deserved, we couldn’t give you that. We all love you and you have given us so much.”

Mia changed me, she shifted how I see the world reflected back at me. I will remember all the love and how in our saddest moments we felt so loved and how much everyone loved our daughter.