Our beautiful boy Sidney has been diagnosed with type 1 SMA (Spinal Muscular Atrophy). SMA is a genetic neuromuscular condition that causes muscle weakness and wasting due to the loss of motor neurons. It is a degenerative disease which if left untreated is fatal. Historically, most babies with type 1 SMA do not reach the age of 2.

At around 4 months old we realised something wasn't quite right with Sid. He wasn't hitting milestones as expected. He was breathing with his belly, unable to support his head, he stopped kicking his legs, and the movement in his arms was getting worse rather than better. He started to struggle with feeding and showed signs of respiratory distress. He was totally floppy. Countless trips back and forth to the doctors and no one knew what was wrong, I was fed up of waiting for a paediatrician referral in the end I diagnosed him myself, because by this point I had Googled so much that I had worked out what was wrong. My heart sank to the pit of my stomach and I knew then that our beautiful boy had all the symptoms of SMA. I sat Aden down on the bed after he got in from his night shift and told him I thought Sid had SMA. I didn’t want to believe the words that were coming out of my mouth but I knew I was right. The NHS website read “life expectancy less than 2 years of age”. I went into fight or flight mode. We rushed him into our local hospital and pleaded with them to help us as we knew how quickly this awful disease can claim a baby’s life. It is a rapidly degenerating disease, every day left untreated matters. A week after bringing him into hospital, blood tests confirmed our worst nightmare, our lives were turned upside down.