Help Super Sid Fight SMA Type 1

PLEASE REMEMBER TO TICK THE GIFT AID BOX IF YOU DONATE THANK YOU. We are continuing our fundraising for Sidney via the charity Tree of Hope. As a registered charity, Tree of Hope are able to help us raise more money for Sid as they can claim Gift Aid and also businesses are able to donate too. By doing this we hope to maximise the funds raised for our boy. Tree of Hope also manage Sid's fund, and therefore donors can be rest assured that all money raised is being spent directly on Sid and his needs. This is our story...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.There is currently no cure for SMA, but there are now 3 different drugs available which help stop the progression of the disease. Sidney has been fortunate enough to receive one of them on the NHS, Zolgensma, and is now receiving Spinraza as part of a clinical trial in Barcelona. Thankfully he is doing well and continues to surprise us all the time by his strength and determination, but his battle is ongoing and sadly very little aftercare is provided for by the NHS. It is left to the parents to research and trial new therapies and treatments, and also to fund them, that’s without all the equipment he needs to help him. The damage that the SMA had already done to Sid’s body by t