cureforclaire

12/09/2025

The moments that we watch over and over again, before diagnosis day, when we got to be parents. When we had two children at home, how we much we miss them interacting with each other. Batten has stole so much for all of us.

12/07/2025

Finally put up all our ornaments, its been a few years, holidays are hard.
The ornaments were a reminder of special memories from trips, gifts, family and friends.

12/01/2025

Today marks another year of life, but all I can think about is this picture. It's hard to find joy on my birthday when my little girl isn't here to share it with me. I'm trying to stay grounded in the present, but the thought of missing out on more memories with my son is devastating. The stress and grief have changed me, and it's hard to recognize the person I used to be. We're supposed to be a family of four, not three. Batten Disease has thrown us into a never-ending rollercoaster, and some days it feels like we're just holding on. There are days when the darkness feels like it's suffocating.
This isnt about sympathy, its about being vulnerable and real. No parent should ever be in this situation, yet here we are.

🎂

11/09/2025

For Josef, Christmas magic is a priority - so we traded trick-or-treating for trimming the tree. His happiness is what fills our hearts. We'd hoped to escape for the holidays, but without Claire, home is where we find solace. With Josef's sensitivity to stress, we're opting for calm moments and cherished memories.

10/18/2025

Dad said it best, because mom has no words. Our dearest Claire....you left us 1 year ago today. I felt you slip away and it feels like it was just yesterday. We all miss you so so so much Claire Bear.

There are no words for the pain I feel, the pain we all feel with you not with us. We will never forget everything you gave us.

Love you forever munchkin.

#

10/11/2025

Evening kisses and cuddles with my not-so-little boy. Love that he is still a cuddle bug.

10/03/2025

This month is a hard one, there are no words to describe what losing a child is like. To watch her slowly lose her light, take her last breath. You try to take comfort in knowing she was never alone, but it doesn't heal the trauma your body felt as you said goodbye for the very last time. 💔😔🕊️

09/25/2025

When did he get so tall?!? Day 2 at the hospital, yesterday Josef received his bi-weekly enzyme replacement treatment, we stayed at a hotel and started the day back here again for an overnight EEG. Hoping to figure out what is waking him up through the night, since the few medications we have tried have been unsuccessful and Mark seriously needs a solid night of rest, its been years! 🙏🏨🩺😴

09/10/2025

Having an amazing dad who goes the extra mile for Josef means everything. We're trying out a new head wrap that's comfortable and sweat-free. Josef's really good at keeping still during treatments, which helps a lot. The medication is pricey, and the process is lengthy, so we need to ensure everything goes smoothly. We've found a better way to do things, and this new wrap might be just what we needed. However, treatment days are getting tougher - more sleepiness and sickness. Today's hospital visit was particularly rough, and now we're facing a long drive home.

09/05/2025

We got the pleasure to work with Lottie last year with both of our children. She is extremely smart and so excited for big things to come.

https://www.facebook.com/share/p/19PWJaDrfk/

New hope for children with Batten disease – a group of extremely rare, fatal genetic illnesses that affect the nervous system, with symptoms starting as early as infancy, or later in childhood 💙

The diseases cause a decline in cognitive abilities and fine and gross motor skills, as well as progressive speech and language impairment, which can cause serious communication problems for children.

To help better treat these issues, MCRI researcher Lottie Morison has characterised speech and language in children with two types (CLN2 and CLN3) of the disease for the first time.

The research has identified the specific challenges a child with CLN2 and CLN3 faces which could help improve outcomes for these children.

Listen to Lottie’s interview on the The Journal of Inherited Metabolic Disease podcast to learn more 🎧 👉 https://www.mcri.edu.au/impact/watch-listen/listen/guest-podcasters

09/02/2025

Today's mixed emotions are real. Capturing school pics without Claire feels surreal, yet we are beaming with pride watching Josef stride into school independently, eager for friends and his new teacher.
Back-to-school shopping was so tough, seeing all things pretty for a girl, we will never buy for again. It reminds us to cherish every moment despite challenges. The unknown looms large this year, but for now, it's one step at a time.

08/13/2025

Josef's curled up in his chair, surrounded by pillows for support.

This might be #160 - and it's been an incredibly tough one.

The neurology team visited us today to discuss managing the progression of his movement disorder.

It's heartbreaking to see him go through this, but we're staying strong for him.

We're fighting to keep his summer full of joy - camping trips, playdates, and sleepovers.

We won't let this disease define him.