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Alex - fighting for better life with spinal muscular atrophy
lucia duchynova
Alex - fighting for better life with spinal muscular atrophy
Story
Hello Everybody!
I'm Alex, 18 months old baby who is fighting for own life. Fighting for the most expensive gene therapy in the world. And without you i will fail. I have a Spinal muscle atrophy (SMA) grade 1. which leads to the gradual loss of muscle cells (and thus the ability to move) and subsequent death within two years of age.
In May 2019, the US Food and Drug Administration (FDA) approved Zolgensma. It is the new and only gene therapy for children with SMA under the age of two, available so far only in America. Zolgensma focuses on the genetic cause of SMA. It replaces the function of the missing SMN1 gene with a new SMN gene, in which motoneuron cells that have not died can survive, function and be maintained. I can achieve a significantly higher quality of life after receiving this medicine. The price of Zolgensma itself is $ 2.185 million.... so definitely i need your help.
Having good people around us moves us forward and we believe that if we join forces, everything will be possible!
If we do it together, I will start a new life in a new way - steps. And one day i will realize that the whole world saved me from a genetic failure that could break my life.
I and my parents Marek and Monika Brdarsky appreciate any contribution, big or small.
Donations made through this platform are secure and will be remitted directly through to my charity of choice.
Thanks so much for your support!
Alex and parents
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Act for Kids
Act for Kids is a for-purpose organisation that delivers evidence-led professional therapy and support services to children and families who have experienced or are at risk of harm. Our dedicated team of psychologists, speech therapists, early education specialists, counsellors, occupational therapists and family support workers have helped hundreds of thousands of children and families since 1988. Act for Kids operates over 30 centres across Australia and has a team of over 450 staff from Adelaide all the way up to the Cape York Peninsula. Our services have expanded to include integrated therapy, support for vulnerable families, special workshops to empower kids and safe houses in remote Aboriginal communities. Through prevention, treatment, research, education and advocacy, we are committed to supporting thousands of children, young people and their families. To learn more about Act for Kids visit www.actforkids.com.au or call 1300 228 000 today!
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