💙 Lana, born in 2014 – Unverricht‑Lundborg Disease (ULD)
Lana was born a healthy little girl, but at the age of seven she received the diagnosis of a severe and rare neurodegenerative disease – Unverricht‑Lundborg disease 💔. This illness causes repeated, unusual muscle jerks (myoclonus), triggered by touch, sudden sounds, stress or fatigue. These jerks make everyday activities extremely difficult, as a child cannot fully control their movements. Very frequent are also epileptic seizures, unstable walking, falls, poor coordination – all of which can eventually lead to the loss of the ability to walk, leaving the child dependent on a wheelchair 🥺.
💛 Lana’s Story
“Mommy, what is happening to me?”… my husband was silent, and inside I was screaming from unbearable pain… 💔🥺 Ten‑year‑old Lana has a severe, progressive and rare disease – Unverricht‑Lundborg disease – which could soon leave her unable to walk 😪💔. But there is HOPE – a gene therapy is being developed in the USA that could change Lana’s life. To receive it, Lana must stay in the best possible condition 🙏❤️🙏.
Lana was born a healthy child, reaching all developmental milestones. She walked and talked earlier than both of her siblings. We could never have imagined that life would place such a cruel challenge before us.
When she was seven, she had her first epileptic seizure. Medications didn’t help. What followed were examinations, tests, and long days of uncertainty. And then came the phone call that changed our lives: Unverricht‑Lundborg disease. A severe, rare, inherited neurodegenerative disorder that progresses and soon takes away a person’s ability to walk, eventually confining them to a wheelchair. That day we received an answer, but we lost our peace. The doctor told us there is no cure, that the disease progresses, that Lana would have difficulties with movement, seizures, and that she would not be able to live independently. I remember denial, tears. My husband was silent, and I was screaming inside from overwhelming anger — but together we had to accept the truth.
Since then, her condition has worsened. Lana had multiple seizures every night; she couldn’t turn in bed, get up, or walk up the stairs. Every night she was afraid to fall asleep because sleep didn’t bring rest — only countless jerks and seizures. The hardest part is that she is fully aware of everything — she knows her body is not obeying her. Light, noise, touch — everything triggers seizures. Because of this, she cannot go to school, cannot be among her peers, cannot build friendships she longs for. When she stands at the top of the stairs and looks down, sadness overwhelms her because she wants to be independent. In those moments, we lift her into our arms and carry her gently — just as we carry her pain and fears.
And yet, Lana remains a fighter. Her will to live is immense, her courage indescribable. She has a special love for animals — they calm her, make her smile, and give her moments where the disease has no power over her heart. To ease her symptoms, she receives high doses of medication. They cannot cure the disease, but they can slow its progression. Because of side effects, we add vitamins and minerals to help her feel at least a little better.
Our only hope is the gene therapy being developed in the United States. To be a suitable candidate, she must preserve as much physical ability as possible — later stages of the disease could mean it will be too late for treatment.
Every step, every movement, every safe transition is a battle for tomorrow. The costs of therapies, examinations, nutrition and supplements are extremely high. That is why today we share her story and ask for help — because any one of us would do the same for our child.
The hardest moment of our lives was when, after one of many long nights filled with seizures, she asked: “Mommy, what is happening to me?” That was the moment our hearts broke. How much we wish we could take her pain away — but we cannot. All we can do is refuse to give up and fight with all our strength for our little girl and her future.
