An Alderley Edge family are desperately trying to raise £35,000 to enable them to take their son to America for life-changing therapy.
Eight-year-old Max Bailey was born with a tiny bit of one of his chromosomes missing. This affects his health and daily life in a number of ways, but the critical issue affecting him right now is that his scoliosis (curved spine) has progressed so quickly that he requires surgery.
Max, who attends Alderley Edge Community Primary School along with his six-year-old sister Tilda, needs the surgery before his curve impacts his internal organs and becomes life threatening.
However, having spent years researching and exploring options his parents Saz and Paul believe following the treatment protocol available in the UK would be subjecting him to repeated surgeries with a lifetime of disability and pain management.
Instead they are desperate to send Max to America to receive three weeks of intensive therapy and follow-up equipment and support. In order to do this they need to raise £35,00: £3,600 for his 3D brace, £4,600 for his home traction chair, approximately £8,500 for an adapted wheelchair and around £5,000 for car adaptation. Max will then require daily visits to attend his exercises followed up by a return visit to the centre every three months.
Saz Bailey explained "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."
Saz Bailey added "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.
"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."
The family intend to set off for America on January 16th and having raised £13,500 - £10,000 of which was raised in just 9 days before Christmas - they still need to raise £21,500 in just 11 days!!
As part of the fundraising events Wayne Little (Wigsy) is organising a 6aside breakfast morning which is being held on Wednesday 13th January between 8am and 10am at the Village Cafe. A team of local residents will be your waiters for the morning, serving a set menu of three breakfast options and a cup of tea or coffee for £10 per head. The Village Cafe are providing everything for free so all the money raised will go towards Max's fund.
You can support Max by making a donation, or simply by following his journey on his Blog or through Facebook, Twitter and YouTube and spreading the message about his cause.
Saz added "I've been a little overwhelmed by the support I've received. I have an open group on Facebook called TEAM MAX where anyone who wants to help with the hands on business of fundraising hangs out. There are about 85 people in there now offering time, resource and ideas."
