16/06/2024
I write to you in desperation because I don’t know where else I could turn, which door to knock on… as all doors are slammed in my face. My name is Timmy, and I am the father of three little children. My son, only 2 months old, suffers from the most severe form of a disease called Spinal Muscular Atrophy (SMA1). It is a degenerative condition with autosomal recessive genetic transmission that affects the neurons in the spinal cord, often also those in the brainstem, leading to their death, muscle mass loss, and decreased strength.
Alex, my little boy, needs a lot of devices because he cannot breathe on his own, he will no longer be able to cough, and he will even lose the ability to swallow due to muscle deterioration. The type of illness he suffers from causes death in little ones without treatment by the age of 18 months, due to respiratory failure. At the moment, we are hospitalized, staying on oxygen at the Mother and Child Center hospital. With God's help and the support of other mothers with special children, I have managed to do what others couldn't – fight against closed doors and harsh words, but finally succeed. With the help of other mothers, we bought a bottle of syrup to start treatment here in the country. The syrup is called EVRYSDI (RISDIPLAM), but the costs are beyond our means. A single bottle exceeds 9000 dollars. Now, while he is still small, one bottle lasts us for 2 months, but as he grows, the doses increase, and we need more. It is very painful to know that your child's life costs such sums of money... How could I manage this alone? Where should I cry out? Which door should I knock on? If I could, I would sell any part of myself to save my child.
That is why we are forced to ask for help to be able to give our child a chance at life. I kneel before God and pray that He sends good people our way who will become Alex's angels and help him bear the pain and suffering more easily. Help me save my boy! Do not overlook our pain!
Thank you from the bottom of my heart!
https://www.gofundme.com/f/support-alexs-fight-against-spinal-muscular-atrophy
