Gunta from Riga is 58 years old. She has devoted her entire adult life to ensuring that the voices of people with disabilities are heard – both here in Latvia, where she heads the organisation SUSTENTO, and across Europe. She has always fought for others, representing them, inspiring them and seeking solutions even when it seems that all doors are closed. Yet now, for the first time in her life, she has to ask for help for herself.
“Since early childhood, I have been living with spinal muscular atrophy (SMA) – a rare and progressive genetic condition. My whole life has been one of constant adaptation. When I lost the ability to move with support at the age of three, I learnt to live in a wheelchair. As my arms grew weaker, I mastered the latest technologies and voice control. I have never let the condition dictate what I can achieve.
But now I have reached a point where my willpower alone is no longer enough. The illness is progressing with every passing day. My arms are growing weaker and weaker – I can no longer feed myself, and I need someone else’s help with basic everyday tasks. But the most terrifying thing is the realisation of what will happen next. If I lose the strength in my remaining hand, I will lose the ability to operate my electric wheelchair myself, to use the telephone or computer, and to work. Once the strength in my arms is gone, so too will my ability to live in my own home, make decisions and do the work I love. As the disease progresses further, it will also take away my ability to swallow and breathe.
I am alone in this world. My mum and dad have already passed away, I have no family of my own, and, however loyal my friends may be, they cannot provide round-the-clock care. Without medication, my fate is inevitable – a care home and complete helplessness. That would mean the end of everything I have built up, believing that I can be of use to society.
At present, there are medicines available in Latvia that can halt the progression of this disease. They will not bring back the past, but they will preserve what I still have left – my independence, my voice and my ability to work. Unfortunately, in Latvia, the state does not cover the cost of this treatment for adults with SMA, and these are costs that I cannot possibly cover on my own.
I still have so many aspirations and plans for what I can give to Latvia and the people around me. I want to continue working, meeting people and representing our country on the world stage. That is why I am taking the liberty of asking for your support. Your donation means to me not just medication, but the chance to stay in my own home, retain my dignity and continue to live a full life. Please help me not to lose everything that is so important to me to this illness,” says Gunta.
Every four weeks, 10,193.68 euros are needed to buy the medicines, totalling 132,517.84 euros for a year’s course of treatment. Let’s help Gunta!
The Project is placed online on: 14.09.2026
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