Doctors said I might not make my second birthday with muscle disease SMA. Now I'm 25

Key Highlights

• Initially the doctor thought there was nothing wrong.
• After my parents requested some tests, he sat me on the side of the medical bed in his office and let go. I immediately fell over and did not move my arms to save myself.
• The doctor caught me and said one word: "Oh."WireImage via Getty ImagesJesy Nelson is calling for babies to get routine screening for SMAAfter further appointments, on 15 October 2001 a neurologist diagnosed me with SMA type two.
• My parents were told I may not live beyond two years old. The neurologist told my parents he would see us again in the New Year for a check-up.
• When we returned in early 2002, the neurologist once again saw me giggling and watching the world pass by, and remarked: "He's a survivor."SMA severely impacts the respiratory system, meaning colds and chest infections developed in the winter can potentially be life threatening for babies with it. My family were signposted to a charity called the Jennifer Trust, now known as Spinal Muscular Atrophy UK, which helped support me.