Genska terapija v ZDA predstavlja edino upanje za 11-letno Lano Meglič, ki trpi zaradi napredne genetske bolezni, ki ji povzroča kronične epileptične napade. Njeni roditelji, Rosana Rozman Meglič in Ludvik Meglič, opisujejo, kako je Lanas življenje v zadnjih treh letih dramatično spremenilo. Po poročilih, je Lanas bolezen začela prikazovati svojo moč, ko je bil njen zdravje vključen v težke napade, ki so jo omejevale v vsakdanjem življenju.
Lana se je rodila zdrava in do sedmega leta je imela normalno razvoj. V tem trenutku so se pojavili prvi znaki bolezni, ki so postopoma postali bolj izraziti. Njena družina je bila zaspana, ko so se začeli ponavljati epileptični napadi, ki so jih sproževali hrup, svetloba in dotiki. Trenutno ne more več obiskovati rednega pouka, temveč trikrat na teden obiskuje posebne ure, kjer je v učilnici sama z učiteljico in mamo, ki jo vsako jutro nosi po stopnicah, saj jih zjutraj ne more prehoditi sama.
Njeni roditelji opisujejo, kako so noči, ko ne spijo, in kako je Lana na hrbtu, ker ve, da se bo obrnila na eno ali drugo stran, kar bi lahko povzročilo napad. "So noči, ko ne spimo. Mi smo pokonci, Lana je na hrbtu, ker ve, če se bo obrnila na eno ali drugo stran, da bo napad," pojasni vidno čustvena mama.
Obstaja vendar upanje v obliki genske terapije, ki jo razvijajo v ZDA. Predklinična faza je končana, septembra bodo terapijo prvič testirali na človeku, ki ima podobno gensko bolezen. Če bodo rezultati dobri in bo terapija odobrena tudi za druge otroke, bi Lana gensko terapijo lahko prejela v dveh letih. Cena terapije je okoli dva milijona evrov.
Ludvik Meglič, Lanas oče, pravi, da si najbolj želi, da bi hčerka nekoč dosanjala svoje sanje. Lanas želja je, da bi postala veterinarka. Preden bo Lana prejela gensko terapijo, mora ostati v čim boljšem stanju, kar pomeni veliko terapij, zdravil in posebne hrane, ki pa je zelo draga. Zato so družini na pomoč priskočili tudi v lokalni skupnosti. Zanjo zbirajo prispevke tudi v gostinskih lokalih.
Hristijan Stojkovski, vodja lokala Story bar, je dejal, da je to punčko osebno spoznal in meni se mu je srce trgalo, ker se ta punčka takrat še ni zavedala, kaj to pomeni. In zato so se vsi stopili skupaj, da ji bomo pomagali.
Za Lano in stroške njene nege, oskrbe in terapij zbirajo donacije na TRR računu Društva Viljem Julijan: SI56 0400 1004 8660 136, obvezna navedba sklica: SI00 22121400.
Lanas družina in lokalna skupnost so se združili, da bi pomagali Lani, ki ima še vedno veliko poti pred seboj. Njihova zgodba je vzbudila zanimanje in solidarnost v regiji, kjer so ljudje pripravljeni pomagati, da bi Lani omogočili boljše življenje.
2 reports
24ur (POP TV)IndependentCenterFactual 80Objective 606 days agoAn 11-year-old girl named Lana Meglič from Tržišče suffers from a progressive genetic disorder that has severely impacted her life. Born healthy, she began experiencing recurring epileptic seizures at age seven, which have worsened over time. The condition makes her sensitive to noise, light, and touch, preventing her from attending regular school. Her mother helps her daily with basic tasks, and they endure sleepless nights due to the risk of seizures during sleep. There is hope in the form of gene therapy being developed in the United States. The treatment is currently in the final preclinical phase and will be tested on humans in September. If successful, Lana could receive the therapy within two years, though the cost would be around two million euros. In the meantime, the family relies on donations from the local community to cover medical expenses and care.
Bias read (Center): The article focuses on a personal health crisis involving a child and discusses medical advancements. While it mentions a U.S.-developed gene therapy, there is no explicit political commentary, framing, or bias in the presentation of facts. The tone remains empathetic and neutral, focusing on the一家人
Why these scores (Factual 80 · Objective 60): This article confirms key facts from the first article including Lana's condition, symptoms, and the status of gene therapy development. It maintains consistency with cross-source consensus but includes more emotional descriptions and direct quotes that reduce objectivity.
LokalecIndependentCenterFactual 75Objective 655 days agoAn 11-year-old girl named Lana Meglič from Tržišče has been battling a rare genetic disorder for three years, which causes seizures, muscle spasms, and progressive loss of mobility. The condition was diagnosed when she was seven, and her health has gradually deteriorated since then. Seizures can be triggered by noise, light, or touch, so Lana no longer attends regular school and requires parental assistance for daily tasks. Her family often suffers from sleepless nights due to her condition. Genetic therapy being developed in the United States offers hope, with preclinical trials completed and human testing planned for this autumn. If successful, the treatment could be approved for other children within two years. However, the cost of developing and administering the therapy is extremely high, around two million euros. Until then, Lana must maintain her health through regular therapies, medications, and special diets, placing a significant financial burden on her family. Many individuals and the local community have joined efforts to raise funds for her treatment, care, and therapies through the organization Društvo Viljem Julijan. Lana's greatest wish is to live a more normal life
Bias read (Center): The article focuses on a medical issue affecting a child and the efforts to fund a potential treatment. It does not present any political controversy, debate, or ideological framing. The content is primarily informational and humanitarian, without leaning toward any particular political perspective.
Why these scores (Factual 75 · Objective 65): The article provides detailed information about Lana's condition, treatment options, and fundraising efforts. It aligns with cross-source consensus on her diagnosis and the potential of gene therapy. However, it uses emotionally charged language ('kruta resnica', 'so noči, ko ne spimo') which affect
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