Life with Liv
Finding the Extraordinary in the Ordinary
Hi, I’m Liv - a happy little girl from Denmark with a big smile and an even bigger heart. I’m three years old and I adore music and cheerful people.
I live with Noonan Syndrome and kidney failure, which means life can be a little more complicated for me than for most children. But I am surrounded by love - from my amazing mom and dad, Vitalia and Lasse, and from my big brother Johan, who is 12 years older than me.
Because of my condition, I can’t go to kindergarten. I stay home, where my parents help me grow and learn every single day while we wait for a kidney transplant.
One day, I hope to tell my own story. But for now, my parents are sharing pieces of it - the ups and downs, the hopes, the challenges, and all the beautiful little moments that make up our life with Liv.
Life with Liv - Here's our Story...
Hello - We are Lasse and Vitalia and we are Liv's mom and dad.
Liv was not just diagnosed with Noonan Syndrome, she was also diagnosed with Nephrotic Syndrome in late 2024, none of this was inherited, it simply developed within Liv, and it’s a very rare presentation of the condition.
When we first started writing our story, Liv was barely crawling, couldn't eat by herself, couldn't say anything, and she was turning four in August 2015 so, as you might imagine, we were and still are both beyond exhausted and filled with sadness. We don’t receive the help we very much need and haven’t had any breaks for four years; no one in the family on either side can manage to help her or take care of her for more than a few hours a day. Liv is getting heavy but we still have to carry her all the time and everywhere!
She also gets sick very easily because she can’t move like normal kids her age and we have a lot of hospital visits, four drainage visits for her ears, a couple of teeth operated out, constant checkups at the hospital for kids who have rare diseases, physiotherapists and on and on.
Yet we remain optimistic as much as we can and train her daily but obviously it’s hard, the hardest ever... We never thought this would happen, but we also never knew anything we could have done! Liv never sleeps properly at night so we are also in a constant state of jetlag - four years of jetlag now… I (Lasse) had to close my company, I have no work at all, I used up all of my savings on this, and am now on unemployment benefit - we barely make it. We are fighting to get proper help and hopefully, it will happen soon. We are in deep crises and depression and also seeking proper help now… it’s been a very lonely few years, just after two horrible years with Corona Virus crap and the year before that with my dad dying and having to sort that out alone for a year…
Our's and Liv's story continue.
It's a Genetic Disorder
Noonan Syndrome is a genetic disorder that can be inherited, but often occurs as a result of a spontaneous mutation. It affects multiple parts of the body.
Presents Distinctive Facial Features and Heart Defects
Common characteristics include distinctive facial features (such as wide-set eyes and a webbed neck) and congenital heart defects, which are present at birth.
Variable Symptoms
The severity of symptoms can vary widely from person to person, even within the same family. Some individuals may have mild symptoms, while others experience more significant health challenges.
Kidney Disorder with Proteinuria
Nephrotic Syndrome is a kidney disorder characterized by proteinuria, meaning there is excessive protein in the urine. This happens because the kidney's filters (glomeruli) are damaged.
Key Symptoms: Edema, Proteinuria, Hypoalbuminemia, and Hyperlipidemia:
The hallmark symptoms include edema (swelling, particularly in the ankles and around the eyes), low levels of albumin in the blood (hypoalbuminemia), and high cholesterol and triglycerides in the blood (hyperlipidemia).
Can be Primary or Secondary
Nephrotic Syndrome can be a primary kidney disease or secondary to other underlying conditions such as diabetes, lupus, infections, or certain medications. Identifying the cause is crucial for treatment
