Our beautiful little girl Macy is just 12 years old. She is incredibly creative, a skilled artist, a thrill seeker, a naturalist, an ice skater, a member of Mensa and diagnosed with ASD/Asperger's.

In July 2019 we noticed a lump on Macy's back near her spine. An x-ray uncovered abnormal curves in her spine as well as a rotation, not long after, she was diagnosed with idiopathic scoliosis. The consultant provided her with a brace which she needed to wear for 20 hours per day. The brace was uncomfortable, restrictive and rubbed on her neck, in between her legs and under her arm which triggered her severe sensory issues which over time has massively impacted on her mental health. Despite this, Macy persevered and tolerated the brace as she, like us, hoped that it would prevent the need for an operation.

In July 2020 an x-ray showed no significant change to Macy's curves, we were happy that the brace seemed to be working and after some therapy sessions, Macy was able to manage her sensory issues a little better.

Last week we had a further x-ray the results of which have been devastating. Macy's top curve has increased from 30 degrees to 44 degrees and the bottom curve from 28 degrees to 37 degrees. We have been told that this is a significant and abnormal rate of increase which has pushed Macy in to the realms of spinal fusion surgery should there be further increase, being at the beginning of her growth spurt this is highly likely.

The NHS option is to continue to brace, hope that there is no damage to Macy's internal organs and spinal cords then when her spine stops growing it is likely she will need spinal fusion which involves fixing metal rods to the length of her spine, due to her having a double curve this will restrict her movement and leave her with a huge scar from the back of her neck down to the bottom of her back.

There is however an alternative. Vertebral Body Tethering (VBT) which in essence is an internal brace. The recovery is much quicker than fusion, back to school after just 6 weeks, her range of movement will be near normal with minimal impact on her future and the scarring is barely noticeable. This is a break through treatment widely used outside the UK which is proactive and can prevent the need for spinal fusion. VBT had been featured on BBC news. https://www.bbc.co.uk/news/uk-wales-43642026. Many parents have been forced to take their children outside of the UK for treatment however there is an amazingly talented surgeon here in the UK who is very experienced and has had high success with many patients.

VBT has limitations and a specific selection criteria which at the moment Macy fits. Unfortunately, further increase to the curvature of her spine or waiting longer could reduce the flexibility of her spine and push her outside the possibility for VBT so time is of the essence. We must find the funds to pay for the surgery now before it is no longer an option leaving Macy at higher risk of other complications and the only option of spinal fusion.

We haven‘t taken this decision lightly and are confident that VBT offers Macy the best chance of growing up to have a close to normal life and be able to enjoy all of the things other girls her age enjoy.

Our healthcare insurance will not cover the surgery as scoliosis is classed as as a chronic condition.

We appreciate it is a massive ask and not one we are comfortable with but we will do anything for our little girl so please, give what you can and help Macy live her best life.