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When asked about how many years Malgosia was left, doctors look down. A few years - this is the answer ... Without treatment, our daughter will die in torment. The disease will take away her piece by piece and condemn her to more and more pain. Until the day when Małgosia simply will not wake up.
"She will not live to 10 years ..."
That day we remember, as if it were yesterday. Małgosia was only three months old then. The result of genetic testing confirmed a very serious, incurable disease. The neurologist invited us to the office, she ordered us to sit down. I asked the first question - "how long will Małgosia live?" "No more than ten years." My wife asked the second question, as if she did not believe what the doctor was saying - "does Małgosia have a chance for a special school?". "There will be no school ..." - we heard.
How could we allow our child to die in pain before our eyes? How could we fall asleep knowing that one day Małgosia might not wake up? That day our hearts were broken in half, but it is these broken ones that have the most strength to fight!
A healthy mind trapped in a sick body
Each epilepsy attack is now like a hurricane that passes through the daughter's body. The hands and feet move involuntarily, and each time with the same horror we stand over her cot! The eyes of Małgosia are the most terrifying then. They become empty - as if they were flying away to another world.
The first attack appeared in the 5th month of Małgosia's life. His wife held her in her arms, she fell asleep. Suddenly, the daughter's body began to tremble, as if she was electrocuted. We went to the hospital straight away. It was hard to look at our tiny child lying in a large hospital bed, hooked up to the cables and with an I.V. in delicate little hand. At the hospital, we were only confirmed that this is the way the disease makes itself felt and that it will not stop, because there will be more and more attacks. Just like the next symptoms ...
Mutation in the gene will make Malgosia's condition worse, her brain will start to die. The worst thing is that our daughter will be aware of everything. Physically, Małgosia retreats, mentally - develops like a healthy child. The disease is so brutal that Małgosia will feel her body stop working. Pain will become an everyday reality. Everything that she has learned so far will disappear, and we will have to get used to seeing her suffering. We will lead Małgosia through death, because if there is no treatment, one day her heart will just stop. Małgosia will not open his eyes, she will leave...
How much is the child's life worth?
In Poland, there are eight children like our daughter, but only two of them still have a chance. Among them Małgosia. The other children are older, they are more than 3 years old. They have lost the chance of treatment, because only up to 3 years of age they can fight ... Later disease makes irreversible changes! We know that we have little time left for us to be saved but we will not let go. Here, it's all about Małgosia's life!
Doctors in Poland and in Europe are helpless. Here, the disease can only be soothed bygiving the child a very strong painkillers, and we do not want to stuff Malgosia with drugs and helplessly wait for her death. The only rescue awaits us in the United States. The professors there are developing gene therapy, which involves the administration of the correct gene through appropriately prepared viruses. In this way, the disease can be completely eliminated. This is the only rescue for Małgosia. The rescue is worth a fortune, over PLN 4 million! There is one more thing - this treatment may turn out to be a revolution! If we succeed, a chance will be opened to overcome the pain for all children with Canavan disease. For children who have been dying of suffering at the age of several years.
Małgosia is our only child and there is nothing more precious for us than her life. Time is running out, and the disease progresses, causing pain and doing more and more wrongs! In our situation, every parent would do the same – try to save his child, till is still hope. For us, Małgosia's life is invaluable. From the point of view of medicine, however, it has a price. Four million - an amount that we have never had and which we will never have.
Please, help us, that the life of our Małgosia will not end at the very beginning...
-Paulina and Robert, Małgosia's parents
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