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.


Vitalia working on the walls
Vitalia working on the walls

Building Liv’s Special Space - A Glimpse Behind the Scenes

As many of you know, Liv receives dialysis at home, and while this allows her to stay close to us, it also fills our home with an overwhelming amount of medical waste and equipment. The first photos (see gallery below) show what accumulates just between the pickups - plastic bags, cardboard boxes, supplies - it all takes up a huge part of our home.

Liv’s room is filled with essential medical equipment, leaving little room for comfort or calm. She also needs to be closely monitored during the night, so the space isn’t just for her - it’s for us to be near, to watch over her, and to respond when needed.

Every other Thursday, we receive large deliveries of her dialysis supplies. You can see the boxes stacked down the hallway - a constant reminder of the scale of what’s involved in caring for our brave little girl.

That’s why this new conservatory space we’re building is so important. It’s not just a project - it’s a necessity. We’ve been incredibly lucky to have help from our family, who built the main structure with love and dedication. Once they left, we took over with everything we could manage ourselves.

And here, I just have to say - Liv’s mum is simply amazing. On top of everything she already does - day and night care, emotional support, and constant planning - she’s been putting in every extra ounce of energy to help finish this space. After a full day, she’s still up smoothing walls, organizing, cleaning, making it warm and welcoming. Tirelessly. She’s our rock and Liv’s biggest hero.

We’re doing everything we can, even when we’re running on empty. And we couldn’t do this without your help.

Thank you all for being here with us on this journey. Every share, every kind word, and every donation keeps us moving forward toward making a space that Liv so deeply deserves - a space for healing, comfort, and hope.

With love and gratitude,
Lasse, Vitalia & Liv

res1600-Livs-Special-Space-1
res1600-Livs-Special-Space-2
res1600-Livs-Special-Space-3
res1600-Livs-Special-Space-4
res1600-Livs-Special-Space-5
res1600-Livs-Special-Space-6
res1600-Livs-Special-Space-8
res1600-Livs-Special-Space-7

 

Liv in the Therapy Room
Liv in the Therapy Room

From Hospice to Hope

Just a short note from us to share how far Liv has come this year.

Exactly four months ago today, we were still at Hospice with her, just beginning dialysis. At that point, Liv’s weight had gone up to nearly 19 kilos - much of it water her little body couldn’t get rid of because of her kidney failure. She was so swollen and fragile - it broke our hearts. But still, and despite everything and her being so ill - she managed to smile. That is what kept and keeps us going, she is such a strong little girl.

Today, Liv now weighs 13.7 kilos and, although still small for her age, she’s doing much better—and most importantly, she’s happy and improving as much as she can.

We’ve added two video clips - one from exactly four months ago, and one from now - so you can see the difference yourselves. In the latest video, she’s playing in her new special room (still unfinished, but already full of life and joy). This is the space where she’ll continue to grow stronger, do her physiotherapy, and prepare for her kidney transplant.

There’s still a long road ahead - but we’re walking it together, and we’re incredibly grateful to each and every one of you for your kind and continued support.

With all our love,
Liv, Vitalia & Lasse