Meet Zente. He was born in 2018. Prior to his arrival his family’s life had been relatively easy, but soon life challenged them, he was diagnosed with SMA.
SMA is a life threatening genetic disease, which causes drastic motor and respiratory muscle waste.
At his current age he wouldn’t be able to move, to sit, or breath independently without the help of a drug called Spinraza.
We remember, when he could hardly move his little feet. Early on, we faced the fact of the risk to his life. We were so afraid, but Spinraza filled us with hope, so we started to fight!
Using Spinraza he could regain certain movements and abilities. However, behind the scenes it is complex, as the doses need to be provided periodically throughout his life, and the administration of the drug itself is painful and invasive.
Our son is a little fighter. I admire him. He is just 19 months old, and he has already had 6 lumbar punctures. He knows what hard work is, since he spends a lot of time doing physiotherapy. As parents we need to stay strong, and we need to convince ourselves that his struggle is his opportunity to live.
Besides the heartbreaking moments when we see him suffering, we need to deal with our own fears. Will he get the current treatment forever, while we are alive and after we die? Who could assure us about his treatment? Who can promise that his little body will always react properly from the Spinraza treatment?
There is hope! In 2019 May, a new drug was approved by the FDA, it is called Zolgensma and it cures SMA! The new drug repairs the chromosome using a special virus, that causes Zente’s body to produce enough proteins to cure him. He could move, play, laugh and grow up to be strong and tall! However, it has to be administered before Zente reaches the age of 2 or this treatment cannot be used!
Last but not least, the real innovation of Zolgensma is the way the drug is administered: it is one single dose. There is only one obstacle to get it: the cost is 2.1 million US dollars, and this price makes it the world’s most expensive drug.
What if we could achieve a single dose cure? We think it would give Zente as much a relief as swimming weightless in a pool; a life without the burden of gravity. A chance to let him live free. We had to give it a go...
We need your help for this life saving treatment. For you it takes a few seconds, for him it could mean a healthy long lasting life.
For your information: the british pound basedcampaign was launched by myself Reni Balazsi, on demand of Zente's mom, Krisztina Tòth. Meanwhile another euro based campaign for Zente is running powered by another person, for those who prefer the euro currency for their donations. I am a close friend of Zente's family and the reason of dedicating myself to this campaign is very practical / logistical, such as GoFundMe does not let launch campaigns from Hungary, for some reason it is not allowed. Since I am Hungarian, I live in England (where gfm campaigns are allowed and I have English bank account) I could launch without problems the campaign for Zente. ALL your donation IS TRANSFERRED RIGHT AWAY TO ZENTE'S FOUNDATION ACCOUNT as soon as it got withdrawed from the system of GoFundMe.