Hi there, I’d like you to meet my little boy Max
He’s cheeky, funny, incredibly affectionate, and happens to have a tiny little bit of one of his chromosomes missing. That displays in a number of ways in his health and daily life, but the critical issue affecting him right now as you read this, is the fact that his scoliosis (curved spine) has progressed so quickly that he’s been referred for surgery.
He needs it before his curve impacts his internal organs and becomes life threatening. Max doesn’t know he needs surgery, He wouldn’t understand. He has learning difficulties that means he can’t comprehend the concept of surgery or why we would do something so barbaric to him. He wouldn’t know the questions to ask or how to tell us why he’s scared or in pain. The thing is – at the moment – he’s bent but not broken .
But if we choose to follow the treatment protocol available in the UK we’d be subjecting him to horrendous, and repeated surgeries with a lifetime of disability and pain management. Would you choose this for your child if you knew there was a different and better option? I’ve spent the last 8 years or so immersed in helping Max realise his full potential.
That’s thrown me headlong into researching, exploring options, and battling expert opinion. I’ve proven surgery wrong before and this time it’s so much more serious. For Max, surgery in the UK means inserting metal rods along the length of his spine. It’s nasty, invasive surgery leaving a scar the full length of his back. He will require repeated surgeries every 3 to 6 months to lengthen the rods through his growth spurt from age 8 until12 and beyond. Ultimately he’ll likely require his spine fused solid and be left with life-long disability and pain management.
There’s no cure or management in the UK – just observation until surgery is required. I know from my last few years of research that there are routes to a better outcome. Dedicated, multi-disciplinary scoliosis centres addressing physical, neurological and genetic influences. I’ve had private x-rays taken showing that Max has a flexible spine capable of curve reduction of around 50%. With that knowledge, irreversible surgery with life-long problems is simply not an option. There are no words to describe the sinking feeling of helplessness when all available routes lead to an horrendous outcome that you know doesn’t need to be. Geography and money should not be the deciding factors of Max’s future. We need to act fast now, and there in lies the problem.
Last year we sank our last pennies into renovating and adapting a single storey property into a family home in which Max can access all areas, have the motivation to move around and feel included. Since then his scoliosis has increased rapidly and, without any other alternate treatment he will have surgery within 6 months. We need to take Max to America in the next few weeks. We plan to go mid January. You can support Max by making a donation, joining Team Max or simply by following his journey here on his Blog or through Facebook, Twitter and YouTube and spreading the message about his cause. Time is against us. Please help us give our little boy the best outcome he deserves.