About us...

Our story...

Hello! My name is Benjámin Micskó. I came into this world in February 2020, bringing immense joy to my parents' lives. I embody curiosity, happiness, and an active spirit, traits that define me as a young boy eager to explore the world around me.I love going to preschool where I enjoy playing with cars/ legos.

Last December marked a significant turning point for my family, as our lives were profoundly altered. My parents were concerned about my physical development, particularly regarding my inability to jump, along with a tendency to walk on my toes and occasional clumsiness. These worries prompted them to seek professional advice, leading us to consult with our family doctor, a physicotherapist, and a neurologist. On December 13th, we received devastating news: I was diagnosed with Duchenne Muscular Dystrophy, a severe and currently incurable condition.

Facing the possibility of becoming wheelchair-bound before the age of 10 and potentially relying on a breathing machine as my respiratory muscles weaken presents daunting challenges for me and my loved ones.

The life expectancy for children with DMD is 26. Following the initial shock of the diagnosis, my family and I swiftly pursued every available avenue for addressing Duchenne Muscular Dystrophy (DMD). As part of my treatment regimen, I receive daily steroid therapy, and my parents diligently engage in leg stretches with me each day, endeavors aimed at slowing the progression of the dystrophy. While these efforts offer some relief, they do not provide a definitive solution. We have been fortunate to receive exceptional support from the Children's Neurology Department at the University of Medicine Semmelweis, as well as the Rehabilitation Center of the Children's Clinic in Budapest, Hungary. The expertise and dedication of these institutions have been invaluable in navigating this challenging journey. Our hopes are anchored in the promise of gene therapy—the sole currently available treatment option. We fervently hope that this groundbreaking therapy will become accessible to me in time.

The timing of receiving gene therapy is significant. While this innovative treatment offers the potential to halt the progression of muscle dystrophy, it cannot restore lost mobility once it has occurred. Though the therapy may not fully restore my mobility to that of other children, it offers the hope of preserving my current abilities and potentially averting the need for wheelchair assistance.

In the United States, a significant development has emerged in the form of a gene therapy for DMD by Sarepta, a leading biopharmaceutical company. This therapy has received approval from the Federal Drug Agency (FDA) for children within the ages of 4 and 5 years old. The therapy's approval represents a beacon of hope for families impacted by DMD, offering the potential to significantly alter the course of the disease. Despite its remarkable promise, however, the therapy comes with a considerable price tag of USD 3.2 million, roughly equivalent to 1.3 billion HUF. Numerous American children have already undergone this groundbreaking therapy, with early results showcasing remarkable promise and encouraging outcomes.

Your help in sharing my story with your friends will not only raise awareness about DMD but also increase the chances of me accessing the treatment. We are deeply grateful for your support and kindness. -Beni

We are deeply touched by the outpouring of support and heartfelt messages we have received since sharing our son's story. Your compassion and generosity have touched our hearts, and we are grateful for each and every one of you. Over the past 2.5 months, we have tirelessly explored various options for our son's treatment, and it has become clear that the only solution is to raise funds for the gene therapy available for 4-5 year olds in the United States, which is one of the most expensive medicines currently available. We are immensely grateful to our managing partner and main supporter, the Tunderkor Foundation, for their unwavering support and dedication to our cause.

Thank you for supporting us to make our dream come true to get timely treatment for Beni.

News, stories...

About us

How can you help?

For donors

Közvetlen támogatás bankkártyával biztonságosan a SimplePay rendszerén keresztül

Ft

We are very grateful to everyone to help us make our dream come true!

Our story in numbers

Currently
332.013.277 Ft
have been collected

What
In 4 months
managed to raise

Contact us...

Contact information

Dr. Szilágyi Boglárka (Anyuka) +36 20 955 2409

Micskó Krisztián (Apuka) +36 70 947 5294

Facebook page

Our Youtube chanel

Our Instagram page