Ends at: 26 March 2021
8 kwietnia Lenka dostała najdroższy lek świata i szansę na pokonanie SMA!
Dzięki Wam niemożliwe stało się możliwe. Lenka dzielnie zniosła podanie i to, że przed nim nie mogła zjeść śniadania, choć mówiła, że jej brzuszek jest głodny :)
Wierzymy, że teraz będzie już tylko lepiej, a nóżki zaczną chodzić - sprawnie i bez problemów. Trzymajcie kciuki za dzielną Lenusię!
On July 14th, we learned that our daughter has a cruel disease in her genes - Spinal Muscular Atrophy (SMA). Our hearts broke into a million pieces... Although the diagnosis was a painful blow, we cannot be knocked out. We must stand up to this unfair fight. There will be no breaks between rounds, and the rival will not weaken on its own. We believe that we have enough strength, but one thing is certain – Lenka needs help. And the most expensive drug in the world...
Our daughter was born on November 11, 2018. We cried with happiness that we could finally get to know her. Fate gave Lenka a unique card – she was born on Polish Independence Day. Back then, we didn't know that Lenka had received two unique cards from fate. The second, three unwanted letters – SMA. We found out about it when Lenka was 20 months old... During her first months, Lenka was developing properly. She took her first steps when she was14 months old. We remember it as if it was yesterday – Lenka carefully puts one foot in front of the next, holding her dad by his hand. Suddenly, she snatches her tiny hand from his grasp to take these few steps without any help! It was like a fairy tale! And then this fairy tale turned into a nightmare...
In March of this year, it was revealed that Lenka had broken her metatarsal ankle. There was orthotics, and then learning to walk again. It was evident that our daughter was less fit, but we lived in the belief that it was the effect of almost a month of immobilization. This put our vigilance to sleep.
Unfortunately, it was not better. Lenka stopped climbing onto the furniture, which previously was not difficult for her. Today, we already know that it was then that Lenka's muscles began to weaken, and the disease showed its true, cruel face ...We made an appointment with a pediatric neurologist. The doctor referred us to the hospital. On Sunday, June 21, we first heard in which direction diagnostics were being performed. It was the first blow. However, there was hope that our suspicions were not true. Unfortunately... On July 14th, we heard what we had been so afraid of in recent weeks. The diagnosis was confirmed – Lenka suffers from Type 3 SMA. It was the second blow, this time knocking us off our feet...
SMA is a spinal muscular atrophy, a severe, rare disease in which neurons in the spinal cord responsible for muscle spasms and contractions die due to a genetic defect. The absence of nerve impulses leads to partial or complete paralysis. Without treatment and rehabilitation, children with SMA die. That's why every day counts! It is necessary to act quickly to slow down the progression of the disease, to stop it while there is still hope!
It is difficult to get used to the news of our child's illness. Sometimes, when we think about it, it seems so unreal. Today, what hurts most is the sight of our daughter, who is rushing to run and play with other children. But her body doesn't allow it. It hurts, because not so long ago it was almost perfect. We are afraid of what will happen next. There are a million black thoughts in our heads that need to be fought back so that they do not dominate the hope for a better tomorrow...
Lenka also probably sees that something has changed. Sometimes, she gets annoyed when she struggles to move, which until recently was not a problem. The sight of our daughter letting go of dad's hand to take a few steps on her own is now a
wonderful and tearful memory. It is also a dream – a dream that someday this time will again return. And we will definitely fight for it!
The hope for Lenka's health is a modern drug treatment and intensive physiotherapy. From January 2019, refundable treatment was introduced in Poland. The available drug is designed to stop the further development of the disease. After the initial four administrations, the drug is taken every 4 months for the rest of her life.
In addition to this treatment, there is also gene therapy with a drug designed to give cells the correct DNA sequence corresponding to the SMN1 gene, which is defective in Lenka. Gene therapy is carried out only once in a lifetime. Unfortunately, it is not refundable, but it has recently become available in Poland! It's the world's most expensive drug...
Without the support of others, we are not able to finance a drug that gives such high hopes to Lenka. Please give anything possible to help our daughter. We believe that together we can bring the day when in Lenka's veins will flow a drug that gives her a chance for a better life despite this cruel illness ... Please.
Lenka's parents, Magda and Matthew
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