Alex is his mom's little boy and soulmate. He is a 2 years and 8 months old boy who loves playing with other kids and loves going to the park, but his frail body does not allow him to do everything any kid wants to do.
At just 3 weeks old Alex was diagnosed with the most severe form of spinal muscular atrophy (SMA), type 1 and by the age of 3 months he could only move his tiny fingers.
SMA is a rare genetic condition that robs him of the ability to move, swallow and breathe. At the time he was diagnosed, there was no treatment available in Romania so his parents immediately left the country to save him. His family relocated to Italy where Alex had the chance to get better quality medical treatment. With the help of Spinraza, the only treatment approved for SMA at the time and in compliance with the SMA standards of care, Alex had good results but up to a point. At 8 months old, he became very ill with pneumonia and his family almost lost him. From that point on, he lost the ability to swallow, he was fed through a nasogastric tube, and at the age of 21 months he had a gastrostomy intervention (a tube inserted directly into the stomach for feeding). In addition, Alex underwent nissen surgery to stop the monstrous reflux he was having.
Alex regained the ability to swallow and eat orally after one year of NG tube feeding and two months following the G-tube surgery. He is a miracle in the world of SMA children. A child diagnosed with type 1 SMA rarely regains his ability to eat orally. There is still a danger of chocking, so he only eats liquid foods or pureed and in a supine position (standing up).
This gives hope to his family that there is light at the end of the tunel. This light is the ZOLGENSMA gene therapy. This very expensive treatment (it costs over 2 million dollars) will give Alex a chance at a normal life, a life that any kid should have.
Alex is his parents’ little warrior and his parents are his guardians and protectors.
His parents fight tooth and nail for Alex’s chance at life. This is what any parent must do for their child.
Please be with Alex and his family!
Alex needs good and loving people like you to help him fight spinal muscular atrophy.
Share the story of Alex’ struggle and help his family give him a better life.
Thank you from the bottom of my heart!