Hello to our wonderful supporters and friends.

We wanted to share a little update on Liv’s progress. Our brave girl has recently started training to walk with the help of a special walker (or gait trainer, as they call it!). It’s such a heartwarming sight to see her standing and taking little steps with the guidance of her most amazing physiotherapist, we feel truly blessed to have her.

Since her dedicated space isn’t quite ready yet, Liv is practicing right in our tiny living room, which is a bit tight for all her needs. The project to finish her special therapy space has taken longer and has been more expensive than we originally estimated. But seeing her determination makes every moment worth it.

Right now, Liv is only able to receive one hour of physiotherapy at home each week, as her health means we can’t take her out much. Still, we’re hopeful and committed to helping her grow stronger and more independent.

Thank you from the bottom of our hearts for being part of this journey with us. Your support is making a world of difference for Liv.

With love and gratitude,

Liv, Vitalia & Lasse

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

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

Dear friends, family, and kind-hearted supporters,

We are overjoyed to share with you that Liv’s new motor skills and therapy room is now well under way! As you can see in these photos, the building project is moving along beautifully - and it’s all thanks to your incredible generosity and support.

Because of you, Liv’s new motor skills and therapy room is shaping up to be even better than we ever imagined. It’s not just a construction project - it’s a symbol of love, community, and hope that Liv will carry with her as she builds her strength before and after her kidney transplant.

What once was just a dream is now becoming a reality, and we couldn’t have come this far without each and every one of you. Your donations, kind words, and offers to help have meant the world to us. What’s even more touching is how many of you have gone beyond donations - showing up in person, lending your hands, skills, and time to help with the build.

From the bottom of our hearts, thank you for making this possible. We’ll continue to keep you updated as the work progresses, and we can’t wait to show you the finished space where Liv will have the comfort, strength, and support she so deserves.

With endless gratitude

Liv, Vitalia & Lasse

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

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

Hi everyone,

We’ve been meaning to write this update for a while now, but the past few weeks have been an emotional whirlwind. Liv’s blood pressure spiked dangerously high—at one point it was up to 190(!)—which had us incredibly worried.

Thankfully, with the amazing care of her doctors and nurses, changes to her dialysis, it’s now under control.

But through it all, our girl keeps smiling—and so do we, because of her.

We wanted to say thank you again to each and every one of you who has donated, shared, or sent love. It means the world. We’re now starting an exciting project: converting our old conservatory into a special space for Liv—a little therapy haven where she can safely grow, develop, and thrive. We’ve begun tearing it down and hope to have it ready for the builders in early May.

We’ll be sharing more photos in the time ahead—of little Liv, of her joyful little face, and of the start of the conservatory transformation. We’re so grateful to have you with us on this journey.

With love and hope,

Liv, Vitalia & Lasse

Dear all - you amazing people who have been so generous.

We would like to thank you all for your kindness and support. We are still in shock here and still can’t really believe it, and especially to Jess who did this for us, what an amazing and truly positive surprise that was. The world is indeed not as bleak as it sometimes seems with all of you people in it shining bright lights.

And also a special thanks to Frank Huser - we are simply humbled and speechless by your generosity.

We don’t know most of you wonderful human beings but hopefully one day we will get to meet you and thank you personally and with our Liv, for which all of your support will benefit her so, so much, and we are happy we now have a chance to do something very special for her to be able to train and develop, it means the world to us and especially, Liv.

We will try and update on the progress when we can so you all can see what will happen.

For now, just thank you thank you thank you all so, so very much.

Love from Vitalia, Lasse and little Liv

Xox

I have raised the goal as I went into this totally blind due to the fact Lasse had no idea I was going to do be doing this for Liv. I had asked him about doing a fundraiser in Jan and he was very reluctant to ask for handouts, however, he also knew that something had to give and at some point he had to accept help when help was offered... so I just did it. I had no idea how much to put down for the goal and I had no idea that goal would have been met in 2 days.

If we can get them to 5k that would be amazing but what has been donated so far is going to go a long way to helping a beautiful little girl to live better...THANK YOU ALL SO SO SO MUCH!!!!!

I just wanted to thank everyone who has donated to help Liv and her parents. Words cannot express their gratitude to all of you. They have been in the hospital with Liv these last few days as she took a nose dive (but she is doing much better now) so they have not been able to express their gratitude so I am doing it for them for now. Your kindness has brought tears to her parent's eyes as well as mine. Thank you so much!!!

Lasse wanted me to share a bit more info with you guys so you have a better insight into what they have all been going through and how much your donations mean to them.

Liv was not just diagnosed with Noonan’s Syndrome, she was also diagnosed with Nephrotic Syndrome in late 2024, with the underlying issues that have caused it being very rare. The doctors have been unable to figure out why her kidneys are failing.

During the course of 2024, from February to October, her health was gradually declining, and so was her development, there were constant doctor visits but no one could find anything wrong, during the summer she started to get horrible seizures, and she was starting to swell severely, by chance a neurologist heard about this and told them to rush her to the hospital immediately, after living 2 1/2 months in hospital it was clear her kidneys were failing rapidly and wouldn’t last long, they were then moved to the Hospice for children because they didn't know what was going to happen and things were moving more rapidly which was making the doctors more worried. But, staying at the Hospice was also for Liv’s parents to get help dealing with it all as up until then they have been looking after Liv for 3 1/2 years 24/7 without any breaks and little to no help from outside.

Liv was emergency baptised on 21. December.

Between Christmas and New Year 2024 the doctors were more confident that her kidney disease wasn’t something that would return, still not knowing what it was, and that a kidney transplant was the only thing that would save her life. She was rushed to get a tube operated into her stomach and went into dialysis at the beginning of 2025. She is responding positive to the dialysis but it’s being constantly monitored and adjusted and Liv is also getting prepared with vaccines and medication to be able to receive a new kidney.

Liv is the only one with the rare Noonan’s Syndrom and a rare kidney disease, whereby the doctors have not found a case worldwide that is identical.

Vitalia and Lasse have not had much help from the system here up until she went into Hospice, not until then did anyone take Liv’s parents seriously, and in the meantime, they have gone through so much emotionally and physically, it has been staggering. No words can describe how heartbreaking it’s been to watch their little girl going through all of that and feeling completely helpless and not heard, or taken seriously for so long.

There have also been signs throughout that something was wrong with Liv’s kidneys, she has had many blood and urine tests done over the past years, but sadly the people looking at them had overseen vital information and not reacted to these! Especially in March 2024 there was a massive sign that was completely overlooked, which showed her protein levels so high that she should have gone into hospital right then. A case of serious medical malpractice that could perhaps have changed the situation Liv is in right now.

It’s been very difficult for either of her parents to work or do anything else other than look after Liv. Her syndrome and condition are incredibly complicated which has made it more difficult to find the right help Liv so desperately needs.

Lasse had to close his company in 2023 and sell all of his equipment. They have spent all of their savings and were unable to get the help Liv needed until they finally had to go into Hospice.

Liv is a tough little fighter and she still smiles. On good days there is lots of happiness and joy, she wants life, and she fights for it every day. This is what keeps her parents going and fighting for Liv. Knowing that a kidney transplant is on the horizon gives them hope and will finally make her well again so she can continue to develop and most importantly, have a good life as much as possible.

Liv’s parents have been trying for over a year to convert their run-down conservatory into a space for Liv, as all her dialysis equipment, hospital bed, and mobility things take up a lot of space in their home. This will allow Liv the space for physiotherapy, muscle and cognitive training, stimulation, and sensory experience which is what she desperately needs as she is unable to attend kindergarten or daycare. Liv is very musical and loves music. When her mum sings to her and plays piano, or when her dad plays her jazz or experimental electronic music, it awakens her senses more than anything else and they see her react with so much joy which in turn gives them joy.

Her Noonan’s Syndrome is making her develop very slowly but she was developing and a year ago things were going really well with Liv and then she declined.

Everything that has happened to Liv is simply due to nature, after extensive genetic tests the results showed that there were no signs of this in her parent's genes. Liv is the most beautiful, sweet, and loving little girl, she gives a lot of love to everyone who has met her.

There is of course a lot more to this story but these are the broad strokes. and so that is why I set up this fundraiser for them.