At around 4 months old we realised something wasn't quite right with Sid. He wasn't hitting the expected milestones that babies should at his age. He was 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, refusing to take his bottle and showing signs of respiratory distress. A week after bringing him into hospital, blood tests confirmed our worst nightmare.
- Further treatment. Many children all over the world with type 1 SMA are thriving and living near to normal lives. They are able to breathe independently, feed without a tube, sit up, crawl, roll over, and some can even walk! This is because alongside Zolgensma, many are also taking another drug called Risdiplam which is not available in the UK. This is a daily drug that Sid would need to take and would cost around £250,000 annually. Studies have shown its effectiveness when used alongside Zolgensma. The only reason it isn't offered in the UK is purely due to its cost, which means that Sid won't have the same chances that those other children do. It just seems so unfair. Why should one child have access to it, but a child in the UK doesn't?
- Physiotherapy, hydrotherapy and other specialist therapy sessions. Whilst Zolgensma is a fantastic treatment, as one Doctor described to us "Zolgensma alone is like going to war with the best machine gun, but with no bullets". This is why it is so important that Sid has 1:1 sessions like this to run alongside his treatment.
- Specialist equipment
- House adaptations
- Bills! Finally, and bluntly put, our ability to keep a roof over our heads and pay our bills! Aden has not been to work for around a month and will not be able to return to work until Sidney is off of his steroids which will be at least 2 more months. The steroids completely suppress Sidney's immune system so we are having to shield as a family to ensure that he is not at risk from infection.
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