WHO 
IS VICTOR?

What are the odds of lightning striking the same family twice? 

 

We are blessed with three beautiful children - Laura, Julie & Victor. Laura is ten years old, is her cheerful self and dances through life. Julie, our beautiful little princess, died early 2017 at the age of 5 from a very rare autoimmune disease. She fought for months against the debilitating ROHHAD disease, but she fought an unwinnable battle. There is no treatment for her disease. Medical science couldn’t help her. 3 years ago, we had to say goodbye to our beautiful girl. This was extremely hard to accept for us.

 

Little Victor came into our lives in July 2019. Victor is a courageous little fellow who brought new happiness to our family in recent months. In November 2019, however, he was diagnosed with the rare muscle disease SMA type 1. SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or even breathe. It is the number one genetic cause of death for infants. What are the odds that one family is affected by two different, rare life-threatening illnesses? But there might be a light at the end of the tunnel. Since September 2018 there is the drug Spinraza®. Thanks to Spinraza®, Victor gets the chance to grow older than 2 years. Victor gets a painful spinal cord puncture every two weeks. But this is how Spinraza® stops the loss of nerve cells. Pharmaceutical companies are experimenting with the development of new drugs for the treatment of SMA. One of these medicines is ZOLGENSMA®. The first results of this gene therapy are promising and have shown good results in some patients. Unfortunately, it is the most expensive medicine in the world. The 1-time only treatment costs 2.1 million (US) dollars or 1.9 million euro. In December 2019, producer Novartis announced that it will organize a worldwide lottery. Every two weeks, one SMA patient will receive ZOLGENSMA treatment free of charge. Up to 100 children will get lucky in the lottery. Often, we already had the feeling that our family had drawn a bad lottery ticket. Suddenly, we literally have to participate in a lottery to "win for life".

We find this unacceptable and inhumane. Victor's life should not depend on marketing or fundraising campaigns or a lottery. We want to be able to fully focus our energy on caring for Victor.  With the website #VictorKracht (“Muscles for Victor”), we advocate for a human solution for SMA patients and their families. At #VictorKracht we will keep you informed about Victor’s journey to regain muscle strength. In 2020 we will launch new campaigns to make Victor as strong as possible. We need your help with this. The treatment and care for Victor will be very expensive. If you also want to contribute to #VictorKracht, then please register as a Friend of Victor. We are grateful for every financial donation, no matter how small. Every donation, small or large, will help Victor on his way to becoming Vigorous Victor again. We’ve set up a special English Go Fund Me – page for donations from Victor’s international friends: gf.me/u/w9h3jw

 

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