Doctors said I might not make my second birthday with muscle disease SMA.
Former Little Mix star Jesy Nelson revealed this week that her twin daughters have been diagnosed with Spinal Muscular Atrophy (SMA) type one, a muscle-weakening disease.
BBC journalist Ben Morris has SMA and describes what it is like to live with the condition.
After my parents requested some tests, he sat me on the side of the medical bed in his office and let go.
My family were signposted to a charity now known as Spinal Muscular Atrophy UK, (SMA UK) which helped support me.
About one in 40 people carry the altered gene that can cause the disease, according to SMA UK.
My dad worked as a project manager, and he used that mindset when dealing with the various support services I needed. »