
Help Save Kazik from Duchenne Muscular Dystrophy
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VERY URGENT COLLECTION! Kazimierz (nickname Kazik), our little son, suffers from a fatal disease - Duchenne Muscular Dystrophy! The muscles in his body are weakening and slowly dying... Losing the ability to move, swallow, breathe - all this awaits our son if no help comes! Patients with dystrophy are sentenced to a wheelchair, a respirator, and die prematurely. It's hard to even write these words, thinking that this will happen to our Kaziu...
We live in Poland, and unfortunately the only viable treatment at this time is in the United States. There is a drug that can stop the disease’s progression- but it is very expensive. The treatment alone can cost $4 million dollars, and this does not include travel, lodging, & other travel expenses associated with his treatment. However, we are not discouraged, and we are fighting with all we have to get our baby this treatment. We need thousands of people with good hearts who would like to donate to our fundraiser to save Kazik's life.

November 11 - Independence Day, celebrated by all Poles, is a double holiday for us. On that day, our wonderful son, Kaziu, was born. We were happy for our long-awaited baby... We had no idea what fate would soon befall us... a dramatic fight for our child's life was about to begin.
During the pregnancy, there was no indication that Kazik's development might be abnormal. A few months - that's how long our fairy tale lasted, during that time we were carefree enjoying our child and being a happy family. Unfortunately, it did not take long, fear crept into our everyday life... We noticed disturbing symptoms that something was wrong with our son. Our son had problems with urination. During the visit to the hospital where a procedure was performed to correct this problem, he was thoroughly examined. The doctors conducted certain tests and the results worried the doctors... They started looking for the cause. After a series of additional tests, we were recommended to perform genetic testing...
Unfortunately, we had to wait a while for the results. We waited full of anxiety, but also with hope that it was a mistake, that perhaps the tests would show nothing abnormal... After all, Kazik is a joyful, smiling child, developing well. Until the last moment, we believed and hoped that the tests would be negative.
On Tuesday February 20, 2024, a phone call from the Children's Health Center in Katowice confirmed our greatest fears... Although we heard the words, we did not want to believe them. We broke down followed by a sea of tears... Kaziu, our beloved son, suffers from Duchenne Muscular Dystrophy. A genetic disease that causes muscle weakness resulting in the loss of all vital functions and finally death...

We immediately had to start fighting for Kazik's life, as he was only one year old. Today we know that in the midst of the tragedy that has befallen us, we are lucky that Kazik was diagnosed very, very early. In most boys--because DMD only affects boys-- they suffer terribly from this disease - dystrophy is typically diagnosed when they are several years old. Previously healthy toddlers suddenly begin to fall, stumble, have problems walking... Then they sit in a wheelchair and gradually other body systems are attacked.
Why is it important that Kazik was diagnosed early? In the darkness of tragedy there is the light of hope - recent years have been groundbreaking in the treatment of DMD. Gene therapy is now available in the USA and saves little boys suffering from dystrophy. It provides the body with the gene responsible for the production of microdystrophin, thereby stopping muscle death. There are two conditions that must be met to be eligible for this treatment- boys must be no more than 5 years old and have the ability to walk! Thankfully Kazik meets those two requirements however, the cost of therapy is colossal - several million dollars.

Dystrophy is a deadly disease that attacks and weakens every muscle, one by one... It happens once in several thousand births. It happened to be our child... Without help, it will be impossible to obtain treatment and our child's life depends on it! Please help us. Any amount would be most appreciated.
Polish website https://www.siepomaga.pl/en/kaziu-sromek
Organizer
Aneta Cebula
Organizer
Key West, FL