I couldn’t save her

22 May

I couldn’t save my daughter. Tilda died in her beautiful magical room at home with her dad and I by her side. She was only 7. And she had gone through more than anyone deserves. We watched our daughter go from running and playing to hooked up to a feeding pump, unable to talk. Batten Disease is the cruelest kind of disease that doesn’t just steal a child but slowly strips them of every ability. It stole her voice which was low and husky. It stole her stride which was fast and furious. It could never steal her Tildaness though. I like thinking this.

There were no options for us after we received the diagnosis. “I’m sorry. The test was positive. There is no cure. There is nothing we can do.”

Nothing? Nothing we could do except watch and wait? Watch our bright, feisty girl retreat into herself and wait for the final sword to drop.

It was pneumonia in the end. She was palliative for 2 weeks. A surreal time like being in an alternate universe. Her breath ragged and shallow. A pressure sore on her ear where she had lain too long. Her face puffy. I lay next to her. In my mind there was a battle.

Don’t give up.

Let her go

Keep fighting

Be at peace

Grief and loss envelop. A gutting pain every time I hear of a new Batten family. The loss in our small community has been overwhelming to bear. Then, some kind of light – a potential treatment? Could it really be? Could it be that a child born in Australia with this beast of a disease can have hope? I hear from families, torturous decisions made to move overseas to be able to access this hope. The disease slowed down, even halted. Precious time given to families and a chance at a life.

It was too late for Tilda. And it is bittersweet to be writing this. Asking for access to a treatment that may have saved her. Or given us more time. 7 years wasn’t enough.

And so I have made my submission to the Pharmaceutical Benefits Advisory Committee to have the treatment Brineura funded by the Australian government.

They need our stories and public submissions can be made via their website. If you knew Tilda or any child with CLN2 and wanted to make your own submission, I would strongly encourage you to submit. Be sure to select CERLIPONASE ALFA – BRINEURA before completing the rest of the form.

Submissions close on the 6th June.



2 Oct

Last Wednesday, a friend and I took our small ones to the ice rink. It’s something we had been planning for a while and Maggie was beyond excited (her love of the movie Inside Out and Frozen has sparked a bit of an ice skating love affair). Although I knew where the ice rink was, I didn’t quite make the connection. As I drove up to the rink, I realised I was driving right past what was Wonderland Fun Park. What is now a demolition site. Wonderland was the site of Matilda’s Magical Wish Day and of course, it was where we said our final farewells.

After skating, we walked into the main area of the Docklands and I walked down the road where the hearse drove and I was overwhelmed with the feelings of that moment as we walked behind the car carrying our beautiful, beautiful girl. As we said goodbye.

I’ve been watching some good old Aussie drama on Stan – House Husbands, something light and fluffy to enjoy before bed. I didn’t expect that such a show would send me to the bathroom in floods of tears. But here I am. Sitting on the toilet, writing this to try and regain composure. In the episode I just watched, the families all went to Wonderland Fun Park. It is a poignant moment where one character is farewelling his children who are moving to Sydney. I had visibly recoiled as soon as I realised where they were but as soon as I saw the characters riding the rollercoaster, I couldn’t watch anymore.

I have calmed. I had to put Maggie to bed and read a story. I am in my room. This grief hits without warning. A part of me feels like it was coming, a week in which I visit the site of Wonderland Fun Park and see it on a show seems too coincidental.

And the fact that the park is now no longer there is a mixed bag of emotions. I would like to send my love to Melissa who ran the park, who gave my family 2 amazing occasions to hold in our hearts. I am forever grateful.

Here is the moment that Tilda first rode that rollercoaster and I knew what an amazing place it was. Thank you Wonderland.

Charting new territory

28 Aug

Maggie has just learnt how to whistle.

She is very proud of herself and we are treated to her whistling for many hours of the day. 

Maggie is a few months away from being 4 and is already able to do many things that Tilda never could. We are in new territory. The conversations I dreamed of having with Tilda, I can with Maggie and it thrills me and breaks my heart all at once. 

Some of the photos I take of Maggie at the moment are so similar to ones of Tilda at the same age, it is a heart jolt. When Tilda was this age, we hadn’t yet heard of Batten Disease, we knew she was battling endless seizures and we could see her struggling. But we thought we had more time. 

We now get to watch Maggie grow and change – so smart, so funny, so full of life and laughter. She is her own person and very different to Tilda but through her, every now and then, we can catch a glimpse of our other beautiful indomitable girl. 


13 Jan

I recently made an important addition to my workspace.

Smiling pictures of Tilda and Maggie now greet me each day and I believe, have had a big impact on my productivity! The pictures also provoke discussions with colleagues who didn’t know I had a Maggie, let alone a Tilda. And stories flow, and condolences are offered. And I learn more about them and some of their stories. Discussion doors are opened. How we ended up working in this area of disability support. How we live with the challenges in our lives. How our clients live with the challenges in their lives. 

I like work mostly, some days more than others. I have recently reduced my days so will soon have a day a week  with the small redhead which will be lovely. 

Summer is here and the sun gives us beach days and beer days and though there are some days when loss overwhelms, the sun continues to rise and set and life continues on. 

As always, I am forever grateful to the people in my world who continue to let me know that Tilda lives on with them through a shared memory, a photo or just a note to say they were thinking of her. 

Here’s one of my memories:

When Tilda was 15 months, I took her on my own to New Zealand to visit my dearest friend and her family. She wasn’t quite walking yet, she would take her first steps a week or so after we got back to Melbourne.  Where we were staying had a set of stairs and I remember how much she enjoyed clambering up them and then coming down on her bum. 

New Zealand was also where she first discovered the joys of tinned spaghetti!

What a delicious child. 


Friends, family and fairy lights

30 Nov

To mark this day, 2 years since Tilda died, we gathered together some friends and family for food and stories. And we lit up our house in her honour. 

Watching the videos of her life heart-wrenchingly showed how much shitty fucking Batten disease took hold as the years passed. But it also showed her bravery and her capacity for joy and it is those moments that we hang on to. 

Thank you for the messages of love and support today.

Tilda’s 9th birthday 

10 Sep

Thank you for the messages and calls today. 

Tough day. No big leap out of the sky to focus on. Quiet. 

We bought a trampoline, which seemed very fitting. We had popcorn chicken for lunch. We scattered some of Tilda’s ashes in the garden of our new home. I got a job offer, which I am thrilled about. We introduced Maggie to a couple of Tilda’s favourite movies – Monsters Indoors (as she calls it) is now a firm favourite but Finding Nemo might have to wait until she is a bit older. 

I miss her so much. 


A new home and a beautiful tribute

29 Aug

We are homeowners! The last couple of weeks have been very busy as we moved into our lovely new home and gathered together our belongings which had been spread around friends and family and storage during the last year. We are notoriously bad packers. So the various boxes were not labelled in any clear or logical manner. It has been an interesting and emotional time unpacking and unveiling the treasures. Many of Tilda’s artworks and clothes have surfaced as well as remnants from her early years. There was a lump in my throat as Maggie spied Tilda’s purple helmet…

 and insisted on wearing it all day. But it has been wonderful to finally have everything here and feel like we are settled in a way that we have not felt before. Home. Tilda’s shoes have pride of place and our walls are adorned with her beautiful smile.  

This week, we had another emotional pull when we went back to Glenallen last Tuesday. You lovely people helped us raise over $3000 last year when we jumped out of a plane on what would have been Tilda’s 8th birthday.  That money was used to purchase an amazing bicycle that the kids at the school can use, and that Tilda would have loved.

On it was a beautiful plaque which makes me cry everytime I think of it

It fills me with so much gladness to know that her spirit remains at Glenallen and that many more kids will get pleasure from this wonderful bike. Maggie was the first to give it a go and she couldn’t wipe the smile from her face.

Thank you to all who donated to make this possible and to the beautiful staff at Glenallen for such a lovely morning – always in our hearts.

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