Sofia vs SMA. Please, HELP!

IMPORTANT 

Our one-year-old daughter was found to have an illness, which until recently, was a death sentence... Sofia suffers from SMA, and without treatment these children die sometime before the second year of their life. Today's medicine gives them a chance- we fight for help for Sofia! There is an opportunity for gene therapy, which has already helped many children. Our daughter Sofia was born on 27th of March 2021, where a healthy baby was welcomed into the world- or so we thought... 

The first alarming symptoms appeared when our little girl was around 6-7 months old. She rarely moved, which made us worried about whether she was okay. The doctors recommended giving her a little bit more time and reassured us she was just developing at a different pace. 

We gave Sofia the time, but after days, and then weeks, there was no progress. She could not sit and did not even try to move around. It slowly got worse- she stopped moving her legs, and on top of that, her hands were shaking from time to time. After consulting with the pediatrist, then a neurologist, it was stated that it was just muscle tension. We were recommended to take Sofia to rehabilitation. After 2 months of intense rehabilitation, the expected results were not showing. The physiotherapist suggested we see a neurologist ASAP. The doctor was shocked there was no progress, and advised we go to the hospital for testing.

SMA, spinal muscular atrophy, that awful thought at the back of your head, which we ignored, not believing that the worst-case scenario would be true. On 1st of April, April Fools, we got the results. We were praying it is a cruel joke, only to find out our daughter had a genetic illness where her muscles get weaker and slowly die. Without treatment, Sofia would lose the ability to move, swallow, breathe, and eventually die. To this day, we cannot settle the fact this genetic illness attacked our little girl... we will never settle this fact, but the best we can do is get to work! We will fight for a better tomorrow, for our daughter, her childhood, and make sure she has a normal life, Thankfully, the medicine will help her. Sofia took her medication immediately, which would stop the SMA from developing. Straight away, we seeked help. Knowing that the most modern medicine is gene therapy, (given in injections) giving Sofia the gene she needs! Children, which were given the injections, made amazing progress, giving Sofia a chance at a normal life despite her illness. 

If Sofia were born 4 months later, we would know she was ill on the screening. If there was no pandemic, we would get a faster diagnosis. We must fight for it, not lose even more! The medication should be given as soon as possible, before it causes havoc on Sofia's body. We are the parents who met the worst tragedy, a deadly illness attacking their child... we beg for your help, for our daughter- we will not give up this easy! Sofia is our miracle, our everything, so please, help!