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Liv's Blog

Liv's Blog

Liv's blog is a compilation of posts from the GoFundMe site, created initially by Jess Cope - a long time friend and collaborator with Lasse Hoile during their work on projects for composer and musician, Steven Wilson. Many of the posts will contain moving contributions from Lasse, Vitalia and their colleagues including video clips and photography of Liv's brave progess through her treatments and life at home with her parents. We hope you will learn from their experiences and help to spread and gather support for Liv and other children in similar situations.


Liv's walking aid
Liv's walking aid

Building Strength for the Road Ahead

Hi everyone,

We wanted to share a little update after today’s important meeting about getting Liv ready—physically and emotionally—for her upcoming kidney transplant.

We had a thorough consultation with her physiotherapist and other wonderful professionals, and together we’re beginning to shape a care plan that will help Liv build strength and mobility. One exciting (and a little emotional) moment was seeing the walking aid—pictured here—which will help Liv learn to walk. It’s going to be a long and demanding journey, especially for her, but we’re so hopeful. Every little step will be a huge victory.

The meeting also gave us hope for getting more organized support at home. After nearly four years of round-the-clock care, we’re working toward finally having some in-home help so that we—as her parents—can catch our breath and maybe, just maybe, do a few everyday things that most people take for granted. It’s strange how something so small can feel so big.

And tomorrow marks the start of the conservatory build—Liv’s future training space right here at home. This will be a safe and protected place for her therapy, where she can practice using her walking aid and receive visits from her care team, all while staying shielded from infections she’s still very vulnerable to, especially leading up to and long after her transplant.

None of this would be happening without all of you—your support, kindness, and donations have helped us move mountains. We’re endlessly humbled and grateful.

Thank you for being part of Liv’s journey.
With love,

Liv, Vitalia & Lasse

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Liv on the way to OUH
Liv on the way to OUH

Our Journey to OUH

This week we took a big step forward in Liv’s journey: we drove down to Odense University Hospital (OUH) for our first in-person meeting with the transplant team. It was an important and emotional day — the doctors needed to see Liv, and we had a long conversation about what her upcoming kidney transplant will involve.

One of the most important parts of the visit was learning more about the donor process. Not just the two of us as parents, but also close family members are now beginning the testing process to see if any of us might be a match to donate a kidney to Liv. If no suitable donor is found among us, she’ll then be placed on the transplant waiting list — which covers all of Scandinavia.

The drive was long, and poor Liv got carsick both there and back — but in true Liv spirit, she was incredibly brave and didn’t complain once. She’s stronger than we can ever put into words.

In short - we are very hopeful for the future, even more so now, and very appreciative for the whole medical team caring for Liv in all aspects of her life.

Thank you all for standing by us — your support means the world during these uncertain, exhausting days. We’ll keep you updated as we learn more in the weeks ahead.

With love,

Liv, Vitalia & Lasse

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