Bartek, a 13-year-old boy who weighs only 13.5 kilos, when asked about his illness says, "I know I am going to die." He tries to be strong and brave because his sister is still there. Weronika, a delicate, subtle, very shy 9-year-old girl with an angel's face, cuddles up into the skinny body of her brother. With him she feels safe. Together they weight merely 27 kilograms...
I promised Bartek that I will save him, that he will live. Looking at him today, I have days of doubt because the disease has deformed his body completely. Weronika is stronger, Bartek’s disease has not left such a big imprint on her yet. She still believes in him. Without Bartek she can’t look into people’s eyes. When she was born, he was already fighting, he was her hero. When asked who is stronger, she answers: Bartek. She believes that he will be the first one to recover, even though she has been feeding him with a spoon for months.
A spoon, or rather the incredible power to raise it - the biggest dream of Bartek, who is weaker and weaker every hour. That’s what we need the remedy for. Thanks to the amazing generosity of donors from Polish crowdfunding page in ‚siepomaga.pl‘ and the Better Destiny Foundation, the siblings received five stem cell applications this year in Lublin, Poland. The progression of the disease slowed down, but the symptoms persisted. Thanks to all of you, Bartek and Weronika are still with us today.
There is no medication that can cure SMA. However, there is Nusinersen - a drug which has appeared on the market recently and which stops the progression of the illness. Unfortunately, although it has been available in Poland since September, it is not reimbursed and we do not know whether it will be refunded at all.
Behind us there are three years of struggle for the health and life of our children, three years full of joy and sadness, faith and the loss of hope that there will be help. When we first spoke with Bartek about his condition, he seemed hopeless. Today, he is slowly beginning to plan his future; very carefully, though, as he hasn’t received the medicine yet.
In this fight, every second is important, every day counts because SMA doesn’t take breaks. Every day causes havoc on the bodies of the children.
There is only one medicine that can help them - Nusinersen! There is also only one person in the world who loves them and wants their health more than anything - their mother.
Nusinersen therapy has already been used in children with SMA. The drug can completely stop the disease and let them live. Such a vision is an unimaginable opportunity for these siblings and their mother. Time is of great importance here, because this game is about life which escapes at an incredibly fast pace.
“The most important muscle – the heart, still works. Sometimes, when the boy is lying, it’s possible to see it. Beneath the skin you can see the regular beats, measuring the time like a clock. Only the eyes have remained the same – wise and piercing with seriousness and understanding. Just this spine and this chest…” sighs the mother. “These parts of the body are unnaturally curved, uncovered by muscles, they shrink and deform each day. This also affects his teeth that have to be removed, otherwise they will fall out," adds his mum.
Bartek is extremely decalcified, only the special Nutridrinks protect him from anemia.
Bartek’s chances to live have been ruled out by the doctors first. SMA (Spinal Muscle Dystrophy) is a sentence spread over time. None of the specialists gave him a chance. Only his mum believed that she could win with the disease. If she managed to protect her baby in her womb for nine months, she can succeed now as well. A lonely mother in a clash with a disease as opponent who has not yet been defeated, seemingly without a chance, and in fact the only person in the world who never doubted. When Weronika was born four years after Bartek, the fear was terrifying. This is normal when the first child is so sick.
In Weronika’s case, the diagnosis was made at an earlier stage. Perhaps that is why she is in a better condition today. Although physically stronger, mentally she has suffered more. She is more often sad, depressed but she does not ask questions. Her beautiful face disarms anyone who has the opportunity to look her in the eye. She still remembers how she was able to walk which lasted for three years. Today, she is sharing Bartek’s fate. Bartek loves life, because he is always with her, whenever she wakes up or falls asleep, when she is sad or smiling. “If he dies, Weronika will not cope with that,” emphasizes their mum.
The disease is taking away their bodies and their lives, and all of this in front of the one person who’d give up anything for them. “I often tell Weronika that she’s a woman just like me and that she must be strong in order to help her brother. She can’t be strong physically though, such power does not lie in her nature.”
The worst news came out when I needed help the most. When it turned out that Weronika has turned the acetabular cups, I heard there was no point doing anything because the child would die anyway. She did not die, she is still alive and I believe she will continue to do so.
Now, although it hurts to look at the crooked spines and ribs of the siblings, you can’t escape and look away. It would be a death sentence for them. They were given a chance by chance - actually the last and the only one in their lives. Bartek is brave, he is not afraid of injections, although it is very difficult to make an injection in his emaciated hands. Weronika, thanks to him learns how to be brave, but it is not enough. The treatment which costs a couple million zloty is their only rescue. It worked once. Polish doctors from CZD (Centrum Zdrowia Dziecka – Child’s Health Centre) agreed to the treatment with Nusinersen but first we have to get the funding to buy this medicine. The one condition is we must secure the annual dose that will allow us to survive. So let's save Weronika and Bartek before it's too late!