Noel SMA1 TV

Welcome to my TV CHANNEL. My name is Noel Robert Olyus. I was born on July 12th, 2019. When I was 6 weeks old my Mom felt that something is not right with me.I wasn’t holding my head, while all the other babies my age were.She also realized that I wasn’t holding my arm. Despite everyone telling her that everything is fine with me, she took me to the Dr. After this I got an appointment to see a neurologist.On October 22nd, I was diagnosed with SMA Type 1.Spinal muscular atrophy (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 breathe. It is the number one genetic cause of death for infants.There is a gene-therapy in the US, this is a single dose injection called Zolgesma.This is the most expensive drug in the World, it costs 2,150,000 USD.This treatment can only be administered before the age of 2.With this treatment I will be able to live a heathy life, and I won’t need a wheelchair.