On January 5, 2023, a year has passed. The year when Kamila and Marcin’s lives turned upside down because they became parents. This always happens when the first longed-for child is born in the family.
A pretty girl receives 10 points on the Apgar scale. She is a joy for all. Her name is Pola and she’s a tiny miracle.
Pola comes into this world and thus joins the group of cousins. She enters the role of daughter, granddaughter, niece. And although she does not know it yet, she will also take on the role of a warrior who will ignite and stimulate thousands of hearts. Hearts that will want to help her.
When the girl was born, everything was the way it should be. She was an energetic child, absorbing her parents ’attention. Her aunts look at her with a tender smile and her cousins look curiously. She is the pride of her parents, especially mom.
However, over time, something began to change, but not for the better. Pola became quiet, calm, and barely cried. The skills she was acquiring with each passing day began to fade. She became less mobile. The only movement she made was to follow her parents with her eyes. The concerned parents took their daughter to a physiotherapist, who found only reduced muscle tone. The doctors reassured that everything was fine, that children develop at different rates. Pola’s mother, Kamila, was not satisfied. After all, Pola stopped doing what she had already learned!
To help the child, the parents looked for more specialists. Two more physiotherapists referred Pola for consultation with a neurologist, for which, however, they had to wait several weeks. When she finally succeeded, the doctor referred the girl to the hospital. There, the doctors immediately suspected SMA. In April came the results of the tests that confirmed the worst assumptions and the world of the young parents turned upside down again. Pola suffers from spinal muscular atrophy! An incurable, progressive disease that weakens and kills all the muscles of the body! If left untreated, it kills babies before their 2nd birthday.
The gigantic cost of therapy
“We heard from the doctors that we are starting a race against time. We learned about gene therapy, already available in Poland, revolutionary, which stops SMA! At that time, however, it was still non-refundable and no one knew if it would ever happen. Its price? Gigantic. 9 million zlotys… That’s how much it costs to have a chance for a normal life for Pola, says Kamila.
The parents take up the challenge of collecting this large sum of money. However, it will not be easy. They live in Subcarpathia, in a beautiful region of Poland, where people live modestly. Since the outbreak of the war in Ukraine, huge aid has been directed there, beyond the eastern border. However, if there was a donor who would fully finance Pola’s treatment…?
This dream smolders in the hearts of the family.
The collection started, step by step, laboriously, every day, penny to penny, zloty to zloty, sometimes a larger sum will come in.
Slowly but surely, it began to take the form of a snowball. Hearts began to ignite from one another. Collections were organized in schools, workplaces, at churches. Throughout the summer in the surrounding towns every now and then you could hear about festivals for Pola. And our little Pola is fighting at this time. She is rehabilitated to keep her mobile. When she gets an infection, everyday life becomes a challenge for her, because it is difficult to gather her strength when the muscles refuse to cooperate.
“The worst thing was to hear the diagnosis. I couldn’t believe it for a long time. And this cost of treatment – 9 million. It’s impossible. But we started to collect, because this is about the life of our child, reports Kamila.
And the snowball is still rolling. Auctions for Pola are a phenomenal initiative in the style of garage sales, where people put up their things for sale that will no longer be useful to them, and will serve someone else. The interest is huge. Everyone can sell something and find something for themselves. But that’s not all, there are also those who also share their skills. “I’ll bake a cake, make a furniture design, invite you to a photo shoot.” Everything for Pola.
Natalia, one of the organizers of the action, says that before the collection for Pola she was involved in charity and together with other girls she led groups for children in need. Hence, the subject of the SMA disease is known to her.
– The SMA disease – spinal muscular atrophy, is a rare genetic disease which, due to a genetic defect, causes neurons to die, which leads to muscle atrophy in the human body. At the end of March 2022, screening tests were introduced throughout Poland, for which Pola unfortunately did not qualify. She was born just too early.
The September list of reimbursed drugs includes the most expensive drug for SMA – Zolgensma, but children up to 6 months of age will be able to use it. The paradox is that tiny Pola is too big for reimbursement of this drug.
Last year, the parents of excluded children met twice in the Sejm, trying to obtain at least a refund for the drug for their children, but unfortunately they were not successful.
– People in Poland are aware that since the drug can be reimbursed, it will not be necessary to organize collections for gene therapy. Unfortunately, at the moment, 17 more families are fighting for a future for their children. Just like us, we are fighting for the future of Pola, adds Natalia.
No one doubts that the whole sum will be collected. Everyone hopes, all the more so because recently an anonymous benefactor has been found in the country, who donated as much as PLN 1.5 million for a similar collection for Oliver, a boy from Wadowice. However, as it turned out later, such a huge amount was paid by parents who themselves collected money for the treatment of a child with SMA. Unfortunately, they did not win the race against time… It only goes to show how a community of families is united in such a difficult experience as a child’s illness.
Events and fairs are conducted for Pola, thanks to which the fundraising account has been credited with nearly PLN 2 million.
Every day there are more and more initiatives, cake fairs, charity actions, online collections. Sometimes even with a grain of salt, because someone put up for sale his version of the well-known Pandora bracelet, created from a metal cable and bottle caps. It’s funny that the bracelet achieves a great result! People want to help! The region went crazy.
Special empathy for Pola’s situation can be seen among young married couples.
– I help because I am a mother of two cuties myself and I know how important the health and life of my own children are. I would give anything to keep my children healthy, says Karolina.
“I simply have healthy children, so I’ll help those who aren’t so lucky. And having a sick child is the worst thing that can happen in life, adds Regina.
Maciej, who won one of the auctions, helps because he knows Pola’s dad, Marcin well, and every day he works with the girl’s grandfather, Wiesław.
“It was natural,” he says. “Marcin and I went to the same high school in Łańcut. We were also connected by the fact that we played together in the volleyball team MKS Łańcut. After that, our contact relaxed a little. However, when I heard about the situation of ill Pola and found out that it was Marcin’s daughter, I had no doubts that I had to help. The more that my first son Franek was born on January 10 of that year, exactly 5 days after Pola. I couldn’t even imagine what would happen if this happened to my family,” he admits in a trembling voice.
Race against time
The collection continues, but it is still not enough. And time is running out, because Pola catches another infection and goes to the hospital. Unluckily, she fell ill at Christmas. This is her first Christmas.
Pola’s mother, Kamila, on the blog Pola fights with SMA writes:
We can’t wait any longer, we’ve lost too much time… This terrible virus still does not let go. And although Pola’s condition is fortunately stable, we are terrified of what Pola has already lost in recent weeks.
Extreme weakness, malnutrition, lack of rehabilitation… all this meant that so many months of hard work on Pola’s mobility, so many tears shed by our daughter, can now be in vain.
Pola’s legs have become limp again – they lie limp, they do not move. Our daughter has also stopped sucking milk from the bottle, which may mean that the swallowing reflex is disappearing. We are terrified and desperate. But we will not give up, we will fight to the end!
We MUST administer Pola’s therapy as soon as possible.
Our warrior Pola touched the hearts, thanks to which over 7 million zlotys has already been collected. But 2 million is still missing. The remaining sum is not easy to collect when time plays against us. However, we believe that we will succeed. We will help Pola together!