Miliony Serc Dla Olafa

Szanowni Państwo dotarła do Nas bardzo smutna informacja,której nikt się nie spodziewał a zwłaszcza rodzice Olafa Krasnowskiego z Gdańska.

Po nowym roku zostało do uzbierania jak każdy kojarzy nie całe 600000 zł z 1550000 zł.

Dziś informacje dostaliśmy,że rodzice Olafa Krasnowskiego muszą uzbierać 17500000 zł.

Wiemy,że to dużo ale prosimy Was nie zwalniajmy tego co już zaczęliśmy wspólną pomoc dla Olafa.

Nie możemy teraz się poddać musimy walczyć jak silni Wolontariusze Siła dla Olafa.

Dziękujemy za każdą oddana złotówkę do tej pory jesteście Cudowni Kochani Wielcy z całej Polski lecą złotóweczki bo ten skarb potrzebuje Naszej pomocy.

Team Gdańsk DLA Dzieci zwraca się do całej społeczności w Polsce pomóżcie Uratować Olafa bo DMD zaczęło atakować Serce Olafka a to zły znak.

DMD Choroba genetyczna osłabiająca wszystkie mięśnie jeśli zatakuje Serce czasu nie ma wiele.

Prosimy Błagamy Was Pomóżcie uratować Olafa.

Uruchamiamy Skarbonkę

 Miliony Serc dla Olafa ❤️❤️niech popłyną z całego świata Fundraiser organizer:

Fundacja Siepomaga

 

https://www.siepomaga.pl/miliony-serc-dla-olafa

 

NOTICE! The disease that destroys his little muscles can be defeated!

 

Gene therapy for Duchenne muscular dystrophy has been recently approved in the United States and is intended for patients between the ages of 4 and 5. The cost is 5.2million dollars (over 17,5million zlotys), excluding drug administration, hospital stay, and a minimum of four months of follow-up examinations in the USA. The amount to raise is enormous, and we are running out of time! We need your support now!

 

Olaf turned two years old in May. He's a cheerful boy who makes everyone smile. Unfortunately, his childhood is far from happy. Every day he struggles with a severe genetic disorder that causes progressive muscle degeneration affecting the whole body. 

 

How did we find out about the disorder? In the 3rd month of his life, we rushed to the hospital - we were concerned about Olaf's health condition. It turned out it was worse than we had thought. After weeks in the hospital and many painful examinations, we were informed about a possible genetic disease, and sent home.

 

 

 

On one hand, we felt scared and uncertain about what was ahead of us, and on the other hand, we were relieved that our son finally came home from the hospital and hoped the diagnosis might have been false. We were endlessly waiting for the genetic test results, which was unbearable and caused our growing fear.

 

Finally, we received a diagnosis, which confirmed the worst scenario no parent is ever ready for - Duchenne muscular dystrophy (DMD). It sounded like a sentence. 

 

It is a rare genetic disorder characterized by progressive muscle weakness. It usually affects boys, but a mutated DMG gene can be inherited only from a woman. Olaf had a spontaneous mutation, though (without a family history of the condition). 

 

The first symptoms of the disease include issues with lower limbs, which soon become so weak that a child can move in a wheelchair only. Next, the upper limbs and spinal muscles are affected, leading to paresis and total loss of independence. 

 

 

 

In adolescence, a person develops severe scoliosis that often requires spine surgery. In time, eating disorders and progressive muscle weakness result in dysphagia (difficulty swallowing) and malnutrition. 

 

Unfortunately, the disease is cruel enough to attack intercostal muscles supporting respiration and the heart. Their progressive weakness results in heart failure, acute respiratory failure requiring putting a patient on a ventilator, and eventually death.

 

Olaf's weekly schedule is filled with physical therapy, pool exercises, extra muscle strengthening exercises, and appointments with a neuro speech therapist. He also regularly visits specialists in Poland and abroad. Every day, we give him massages that relax the muscles and prevent adhesions. Despite that, our son often wakes up screaming and cries from pain while holding his legs. 

 

Gene therapy in the United States can stop or significantly slow down the progress of the disease. We only have two years left to collect the enormous amount of money - the drug must be administered between 4 and 5 years of age. We are running out of time!

 

 

 

Despite the new possibilities, we know we won't be able to raise the money ourselves. The current treatment of the symptoms of the disease is already expensive! We are starting our fundraiser today, asking for donations. Only thanks to you, little Olaf can have a chance for gene therapy! 

 

The disease impacts every minor activity. We try to make the indoor and outdoor activities engage as many muscles as possible. Although we want Olaf to enjoy his childhood and freedom, we must also remember to make him participate in exercises and games that build muscles. 

 

The more physical abilities Olaf sustains until gene therapy, the higher the chances it becomes effective! We are grateful for every donation, support, and share. We hope our fundraiser will be successful so that Olaf can thank you for saving his life. 

 

Olaf's parents