We really wanted to post a nice picturesque Christmas card and to tell everyone that Liv was over all the last small details and finally on kidney transplant list, which was the plan, a simple, positive no-nonsens update…. Buuuuut, a last minute decision that she needed to get a PEG tube (Percutaneous Endoscopic Gastrostomy tube) operated into her stomach, because the transplant team was worried all the medication she would need, when we get the call a new kidney is on the way, she would need a healthy dose of medication and in case she didn’t want to take it orally and on time, such a tube would be best, and we also agreed since Liv already gets so much medication orally and has a hard time with half of it, this was the best solution instead of having this done same time as her kidney transplant.
Long story short, while in surgery they then saw Liv had not one - but two(!) stomach ulcers!! Which now also explains why she’s been extra unwell for a very long time, not wanting to eat proper, constant nausea, extra problems with sleep… the list goes on… what just makes us a bit sad is that we have asked for a endoscopy (and also colonoscopy) for over a year, also because of her chronic stomach problems… but we are just happy they found out before it might have gotten worse as some of her pain medication (NSID) only made such worse… but how could we know?
So we are again in an extended stay in hospital, flashbacks to last year… but now Liv is FINALLY, getting the proper treatment for this, and after last couple of weeks with the stomach team also have positive progress there, she just needs more meds and a new tube is more work and possible infections to worry about… it also means that Liv’s kidney transplant list is moved again 4-6 weeks into the future.
BUT - then it’s smooth sailing from there (as can be with such a thing) no more setbacks, no more problems - just a positive recovery and soon a new kidney so Liv can get her strength back and start to develop proper, it’s the only thing we wish and hope for now.
So, we just wanted to let you all know the status of the end of 2025, and what a year it has been, this time last year Liv was emergency baptised, we didn’t know if she would survive, we got transferred to hospice… but luckily hope was there for our Liv, although we had hoped getting on that list in the summer, but such is life. Luckily we were also blessed with such heartwarming and amazing support from all of you, and dear Jess started that amazing fundraising page - she is an angel.
It got us through this year knowing there are so many people out there thinking of us, helping and we do wish we one day will be able to meet you all and give you all a big long hug, meet our Liv, who is full of life and fighting the hardest battle for her life - she will get through this, WE will get through this, thanks to all of you, although most of you are strangers, we feel we know you all a little and will always be welcome here.
We wish you all a peaceful Christmas and a very happy New Year. May 2026 bring more peace to the world and less of the chaos we have all felt lately.
With love and peace,
Liv, Vitalia and Lasse
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.
Today we are in hospital and tomorrow Liv is once again going to get a new tube operated in her stomach (the fourth time with this, and eleventh time under anaesthesia - which is fairly standard and routine, but still hard to sit with her, give her a mask on and then hold her tight - as she tries to get it off… and then she just becomes completely silent, it’s never routine for us and it does get to you still as if it was the first time) - she has been on the antibiotics again for three intense weeks, so now we hope, this will - and MUST - be the last time, at that she recovers quickly and then in, hopefully, four weeks’ time, we can finally get on the waiting list for a new kidney for little Liv❤️
That is our hope - positive thoughts in the right direction
And still, there is so much to say and report, but exhaustion (which has been a buzzword it seems, for so long, that everyone including ourselves must be tired of hearing it by now) - it’s just - incomprehensible, how to describe the indescribable… you can’t really, unless you have been in, or through, something similar, it’s just impossible to know how it’s like. So things we write either seem too gloomy or perhaps even too upbeat - that things are ‘not that bad’ - personally, I think, I’m just getting there now where everything is just too much now, too tired to say more right now, and too beat up. In short, it feels like we have been battling multiple fronts all at once, and obviously this is not war, no one wins such.
Despite all that, we DO ABSOLUTELY remain as positive and hopeful as possible, we do. There are absolutely small signs in Liv’s development each day and week, and her daily training and everything we and her little team of external help can get Liv is, slowly, but surely moving in the right direction It’s always been 1 step forward 2-3 steps back, but perseverance does pay off. Therefore, we really hope when little Liv goes on the kidney waiting list there won’t go long, that’s the only Christmas present we really wish for, (even if it weren’t so close to that holiday season) because her kidney failure has just put a huge plug in her development and Liv being Liv with Noonan’s Syndrome - time is so damn precious and the sooner everything sets in everything training - with everything from speech to motor function to brain development - the better and faster she will develop. So obviously we have been (and still are really) a bit saddened with her Nephrotic Syndrome on top that might have cost her not ever developing better - but we have also accepted that Liv is Liv and she is so bloody wonderful no matter what. And she is still the one smiling at us every single day, no matter if we’re in hospital getting jabs or tests or nights have been murderously bad, and that is what keeps us going and working 24/7 every single day of the year until she is on a streak of perpetual happiness and adventures (that doesn’t include hospital visits of the less than fun side).
We are hopeful and we remain optimistic and positive - even when we are so down and out we want to set fire to ourselves or each other - and I think - you who have experienced this know exactly what I mean.
There is an inherent chronic tiredness to me, especially now, and I think I won’t be able to post much more this side of 2025. I hope you will understand - we will, of course, update if something spectacular happens, but I could sleep right now and way into 2027 if I got the chance - and hopefully, the world will be a bit more sane also if somehow I got that chance.
But!! We all three here would really and loudly give some people a huge end-of-year proper THANK YOU, long overdue and never enough can even make up for it… Especially to Jess, for setting up this GoFundMe page. Out of the blue, it came just when we needed some divine intervention at that point in our lives the most. You are such an angel, a star, and a friend for life. If only there were more like you in this world - it would surely be more spectacular❤️ words still just can’t describe what you, and everyone here who helped, did for Liv especially. We will forever be grateful and, hopefully, one day, do one back. And once the dust settles here, a big bash is in proper order - and I miss you❤️
And to Frank Huser - you’re just too kind, seriously! The kind and thoughtful and inspiring messages were and are still lingering here - and will always be - and we know we are behind on getting back to you properly. Like so many others, we promise, 2026 is the year all this turns around - THANK YOU ❤️
And to Chris Elliott - whose kindness and overwhelming help has gone ahead and made this amazing new site for Liv and us: www.lifewithliv.org - we would have mentioned it sooner but… life with Liv happens and getting the time has been next to impossible - but moving forward we will be writing a lot more there on our continued journey with Liv and us - and hopefully be able to dish out some help and advice for people either just experiencing something similar or going through it - we will try to help in any way we can. And we hope you will visit the site and share it. Thank you Chris, you have made something amazing for us and we are just so grateful, we just can’t thank you enough for this❤️
And thank you Matti, Patrick, Steven Rothery, Mike St-Jean, Jeppe, Bettina, Luis, Theo Travis, Derek, Richard, Rob, Stephen, Elizabeth, Jan, Alex, Shannon, Kimberly, Farzad, Ulrik, Sarah, Aditya, Bryan, Mike, Michelle, Claus, Pavel… crikey - the list is so long… just know that without all your incredible kindness - we most likely wouldn’t have been able to get through this year, and being able to make that amazing special space for Liv has worked wonders, and will continue to do so for many, many years. You all are lifesavers and we just still can’t believe or get over that so much support we have been gifted with and from so many we don’t know or have ever met, we can never thank you enough and will never forget it. You all are here with us, with Liv - for the rest of our lives❤️
Lastly, it’s also not lost on us that there are so many families going through similar things here and around the world, that we are lucky to have a healthcare system that’s working (sorta) and able to get help, although not without issues, but we do think about those less fortunate than us too, especially all the places where hospitals and help are either nonexistent or just bombed - we do try to help back where and when we can and knowing that there are so many good people in the world still - it gives us hope despite things seemingly seeming bleak. We are incredibly grateful for all the help we get, the kindness and the messages from strangers from all over the world. And we hope for a better 2026 - for everyone.
Thank you again for everything.
We hope you all have a peaceful Christmas or whatever festivities may be where you are in the world, and a wonderful new year.
Spend time with your families and loved ones as much as you can, it’s the most important thing you have, each other.
Love from us all ❤️❤️❤️
Liv, Vitalia & Lasse
