cureforclaire

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Raising awareness for CLN2 Battens Disease.Follow siblings Claire and Josef on their journey as they recieve treatment and fight for a cure.

09/09/2026

This first day of school came with so many mixed emotions.

This year, Josef took the wheelchair bus instead of riding in a van with his friends. School will look different too—he now needs help to walk and will attend half days to preserve his energy. I’m grateful he is able to go, but my heart aches for everything that has changed.

And then there were the school labels—one set for Josef and one for Claire. Another year of only needing one. Another year of sending just one of my children back to school.

I’m trying to hold the grief and the gratitude together—to be thankful for what we have, while still mourning everything we have lost. 💛

08/20/2026

Josef's happy place!

He loves to go camping, or should I say glamping. Josef's respite worker has a trailer nicer than my first apartment. She loves to take him to all the local provincial parks we are so happy to have. Parks Canada

Getting these pictures reminds me it's okay to take a break, that someone can take care of our son, and that he has way more fun with a friend than he will with mom and dad.

Just a reminder to all the caregivers out there.

Keep an eye out for an article I wrote for the The Villager about the invisible weight of caregiving and an amazing podcast series I was lucky enough to help make happen.

08/17/2026

Summer's been a wild ride for all of us. Josef told us he didn't want to walk anymore, it was just too hard.

"Heartbroken" doesn't even begin to cover it.

We started to see that Josef didn't want anything Claire had. A walker, a wheelchair, constant help around the house – anything he connected with her.

He'd totally shut down, demand his independence, do less, just so he wouldn't need help from anyone or anything.

There's nothing we can do but try to think outside the box, never push, just keep offering new things to make life a little easier.

As a parent, knowing we could help him save energy, keep his independence, keep him safe, but he doesn't want any of that, is really tough to take.

Then, out of nowhere, he decided instead of sitting in his walker, he wanted to walk home. We didn't ask him, it was all on his terms, no pressure. And he did it.

Was it hard? Yeah. Did it take a ton of energy? Yep. But he still did it, and that gives us hope that he'll realize equipment doesn't mean you're sick, it just means you want to keep going and you're not giving up.

A reminder for all of us to keep going!

08/04/2026

Decision fatigue is real. As adults, we already make thousands of decisions every single day without thinking about it.

Now add the thousands of decisions you need to make on behalf of another person who can't make many on their own; throw in medication, then side effects. Top it off with guilt, never knowing if you are making the right decision, seeing your baby struggle, and knowing it will never get better.

We focus on the good, because it's all we have, but behind that are lots of sleepless nights.

Josef has experienced so many changes this year, and we haven't found stability before the next symptom drops. Batten Disease is relentless; early diagnosis and treatment bought him more time, but it didn't stop the disease.

We have no idea what the future will bring, but we are sad, he is sad, and we are all very tired.

Going through it once does not make it any easier; it makes it even harder. We will never understand why our children had to experience this nightmare.

07/21/2026

Happy Birthday to the best dad. ❤️

Life has thrown us more than our fair share, but somehow you always find a way to make Josef smile. Thanks for being our steady, patient, funny, and loving guy.

Hope you have the best birthday—you deserve it. We love you! 🎂🎉

Sorry the weather isnt cooperating for you to get a golf game in, but thats our life 😆

Mark Gortnar

07/14/2026

One of my all-time favourite videos I have of Josef. He just learned to say Hi, and he was always bothering his poor sister. All she wanted to do was nap, but he wasnt having none of that.

06/26/2026

Graduation Day is bittersweet. Seeing Josef graduate 3rd grade, I'm so incredibly proud of him. Knowing that I only meet one child from the bus everyday is still really hard.

Just a reminder to those lucky enough to not experience losing a close loved one, there's no timeline on grief. There's no way to prepare for a trigger, just feel the feelings, it only reminds you how lucky you were to love someone so deeply.

06/23/2026

Just wanted to let you know, I grew almost all of these in my garden.....definitely didn't build the arrangement, but I'm still super proud of myself! PS find a bestie who is a floral baddie.
Wild Carnations, clustered bellflowers, and peonies. Just a reminder: planting a few perennials is the gift that keeps on giving. You also don't need a huge yard, just some sun!
My sprinkler system isn't on yet, so I haven't even needed to water them.
Follow me for more gardening tricks that require zero effort, because as a medical needs mom, I don't have a lot! 🌸🌼🌻

06/21/2026

Happy Father's Day to the most incredible dad. Watching you with Josef reminds me every day how lucky we are to have you. You show up, you fight for our family, and you love so deeply. Father's Day will always feel different as we miss Claire more than words can say. Her absence is felt in the quiet moments and the spaces she once filled with her warmth and laughter. We know she would be celebrating you today, just as she always did. Thank you for being our safe place. We love you more than words can say. Happy Father's Day, Mark. 🤍

06/01/2026

Today, Josef turns nine.

Nine years of courage, resilience, and finding joy in places most people we miss.

This past year has brought more challenges than any child should have to face. A new port, changes in his mobility, and the reality that some things are becoming harder. He's aware of those changes, and some days are really tough.

But what amazes me most is that he never stops finding magic in the little things. His imagination knows no limits. When something becomes difficult, he adapts, tries again, and finds a new way forward. He continues to teach us what perseverance really looks like.

He's sensitive because he's lived through experiences that would test most adults. He's affectionate because he understands how important connection is. He's brave because every day requires courage, whether people see it or not.

Birthdays are complicated for me. They are a reminder of how quickly time moves, how much has changed since the year before, and all the things we wish could be different. But they are also a reminder of the incredible person Josef is becoming.

Nine years of showing us that challenges don't define a life—love, joy, determination, and wonder do.

Happy 9th birthday, buddy. Nothing can keep you down." ❤️🎂✨

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Horseshoe Valley, ON

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http://cureforclaire.com/, https://www.arbormemorial.ca/en/adams/obituaries/claire-celje-gortnar/131023.html

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