Together for Olga

Story of One Little Cutie girl

A few days ago, we have learnt about our daughter’s terminal disease. Olga is only 14 months old… She suffers from spinal muscular atrophy – SMA. Her muscles are weakening and dying slowly. We are still shocked, despaired and frightened. Yet, we know that there is no time to loose – the disease is advancing. It cannot be stopped but by the world’s most expensive medicine. Olga needs to take it as soon as possible. We are begging for help!

It is hard for us to write about it, because we still cannot believe the truth. We keep asking ourselves: why us? Why her – our little, defenseless girl? Why the cruel fate did deprive her of the most valuable: health? SMA is a very serious, genetic disease. Olga’s body does not produce proteins, which feed neurons, responsible for muscles’ work. Muscles – responsible for movement, but also for speaking, swallowing, breathing – are dying. Without treatment, such disease is nothing but a judgement.

Yet nothing forecasted such a tragedy. Olga was born in September 2019 as a healthy, strong girl. She received 10 points in Apgar scale. We also have an elder, healthy daughter, who was eagerly waiting for a sister. At first, it seemed that Olga was growing faster than her sister was. She was strong, did not catch any disease – not even a runny nose. She ate without problems, played with Kinga with visible pleasure and we enjoyed her fantastic mood and her wonderful smile.

When Olga was 10 months old, we started to worry why she did not sit or stand on her own. We were comforted that she was going to catch up, that she was just little and thin, that she just needed time. We were, however, afraid that something was wrong. We contacted a physiotherapist, then another one, and another… Most said that it was probably just lowered muscular tension, that everything can be treated by rehabilitation. Finally, we met a specialist who discovered SMA symptoms in our daughter’s situation. He ordered genetic tests to be performed at once.

In spite of Olga’s tragic disease, another drama is the current COVID-19 pandemic situation, during which all diagnostics was made. Reported and cancelled visits, waiting times longer than normal, waiting for test results – all this extended in time. Diagnosis was confirmed only on Friday, 20 November 2020. Until the very last moment, we hoped that our fears would not be confirmed. We hoped that the results would be fine, that our little, smiling daughter was healthy, without defects, without genetic diseases. Unfortunately, the reality is different. Olga suffers from spinal muscular atrophy, SMA type 2. She is terminally ill.

Frightening shock. Enormous pain. A sea of tears… On Friday, 20 November 2020, our world ended and we still cannot awaken from this shock. Yet, we know that we must act. We cannot save our daughter with despair and helplessness. She is counting on us; we must fight and act NOW!

If Olga were born a dozen or so years ago, she would have had no chance to survive. Fortunately, there is a different situation now. Our daughter immediately started a treatment with a medicine available in Poland. This medicine, however, does not stop the disease completely, it only slows it down.

Olga’s greatest chance is the gene therapy – the world’s most expensive medicine. It delivers a copy of the gene that Olga is lacking and due to this lack, her muscles are dying.

The sooner she gets it – the better; the lesser damage is done in her body. Olga cannot sit on her own. When seated, she keeps upright, but does not crawl. Her limbs are too weak to move. What will happen next?

The gene therapy is the world’s most expensive medicine, because a single dose costs over 2 million US dollars! We are aware, that SMA is an extremely rare disease and that developing a medicine takes years of efforts, yet the amount is horrendous. We get frightened every time we think about it. This helplessness is killing us and breaking our hearts. Everyone would sell anything she or he possesses, anything, to save her or his child. This would not suffice, though…

We are afraid that we will not cope with that challenge… We are even more afraid of the fact, that Olga will get worse and we will be forced to see her slowly dying. We only want her to stay with us, as much fit and independent as possible. That she can live on her own when we are gone. We know that nothing but the gene therapy will give her such a chance.

That is why we will not give up. We will keep fighting; we will do everything for Olga. We have to move heaven and earth to get the money needed for the medicine. Therefore, of the whole power of our hearts, we are asking you– JOIN US! The faith in people of good hearts (we mean YOU), that they will help us saving our daughter, is the only we have.

Olga’s parents