Life with Liv

Meet Liv – a little girl with a huge heart.

Born with Noonan syndrome and a rare kidney disease, her journey is full of challenges, courage, and love.

Every day she fights to grow, explore, and shine in her own unique way.

This is her story – a story of strength, hope, and the rainbow hands that make her truly one of a kind.

A journey of strength, surprises, and so much love.

I was born on August 26, 2021, after a healthy pregnancy and without complications. My mom carried me safely, and my parents waited with so much joy to meet me. None of us knew how much life was about to change.

The early days were hard. I had colic, and by five months, my parents noticed I wasn’t developing like other babies. I would lie for long moments, staring at my hand – comforted and fascinated by it. Doctors began to suspect conditions like cerebral palsy or spinal muscular atrophy, and I went through many tests and scans.

In June 2023, just before my second birthday, the doctors finally found the answer: a newly discovered mutation in the gene LZTR1, linked to Noonan syndrome. For my parents, it was both painful and a relief – painful to know, but also a relief to finally have an explanation, and hope.

Growing, slowly but surely.

I will soon be four years old. My development is much slower than other children’s, but step by step, I keep moving forward. At 2 years and 4 months, I learned to eat with my hands. A month later, I began crawling, opening up my world. In autumn 2023, I started at a special kindergarten where kind teachers and children helped me learn and laugh.

When things got worse

By spring 2024, I began to lose strength. I caught every illness, stopped crawling, and grew more and more tired. On my third birthday, I was very sick – exhausted, in pain, and having seizures. What nobody knew then was that my kidneys were failing.

Later, I was rushed to hospital and diagnosed with nephrotic syndrome, a severe kidney disease. My body was losing the very proteins and nutrients it needed to grow. By then, my kidney function had dropped to 30%. The seizures turned out not to be epilepsy at all, but the result of vitamin deficiencies caused by my kidney condition.

The hardest part

Having Noonan syndrome already means my brain develops very slowly. Adding a rare kidney disease on top has made life even harder. I fight every day just to keep up my health, and that leaves little energy for my physical and cognitive development. For my parents, that is the hardest part – watching me fall behind while knowing I am almost four years old.

What we wish for most is a kidney transplant. It can’t come soon enough.

The girl with the rainbow hands

From my earliest months, I found comfort in looking at my hand. It was my way of shielding myself from the world when it felt too big. Even now, it remains part of me – a reminder that I am not less, just uniquely me. My parents call me the girl with the rainbow hands.