Our daughter Macy has just had her 10th birthday. To say she is active is an understatement. She likes gymnastics, trampolining & hip-hop. She likes riding her bike & swinging from trees. She is daring, adventurous & has no fear. Flexibility & mobility are very important to her, but for the last three years, Macy’s activities have been severely restricted.
Macy was diagnosed with scoliosis at six years old, with three curves in her spine, each measuring from 40 to 48 degrees. For three years, she wore a brace 20 hours a day, to prevent her condition from becoming worse. While Macy coped well with this to start with, by year three she lost her ability to cope. Bracing is widely acknowledged to produce immense psychological stress and in common with many other brace wearers, at times she felt ashamed, scared, angry and stressed. It made her feel different from her friends at a sensitive age, was restrictive and often uncomfortable. We sought a second opinion in August 2016 and were advised that given the negative impacts on Macy’s emotional well-being, she should discontinue brace treatment. Her condition has since deteriorated rapidly & she needs surgery now, before she has another growth spurt. In such cases, the NHS perform a spinal fusion.
Spinal fusion will be life changing for Macy. It will involve inserting metal rods into her spine & fusing the vertebrae, so that her spine becomes one solid bone structure. She will not grow any more in height, although her limbs will continue to grow. It will severely limit her flexibility & movement, which is so important to her. While the NHS only offer spinal fusion, as Macy’s parents, we have always been unwilling to accept that this is the only option for her. After countless sleepless nights & weeks of research to find an alternative treatment, we found our miracle - vertebral body tethering or VBT.
Unlike fusion, it allows for continued growth & mobility of the whole spine. It is the only procedure which will straighten Macy’s spine while allowing her to grow & remain flexible. Surgeons place screws in the affected vertebrae & attach the screws to a flexible cord to pull the spine in a straighter position. This realigns the spine so it can continue to straighten with growth & maintain flexibility. The surgery is less invasive than fusion, involving a five-inch scar as opposed to a full spine incision down the middle of the back. While this is desirable cosmetically, it also means less blood loss, less risk of infection & faster recovery time, as there is less muscle, bone & tissue damage.
We met with a private consultant in England in the summer & planned to take Macy there for this surgery, when an operation was necessary. However, recent red tape around medical re-classification of VBT means private consultants are unable to offer this treatment in the UK for 6-12 months from October 2016.
This decision could not have come at a worse time for us. Macy’s condition has deteriorated significantly in recent weeks & she is often in pain. Her consultant states he must operate now. But as Macy’s parents, we cannot let her have the fusion. It may save her physically, but it will destroy her in other ways, having major consequences for the rest of her life. As fusion is now the only option in the UK, our only hope is to go to America for anterior scoliosis correction, but time is running out.
We are committed to having this life changing surgery done for Macy & will do whatever it takes. The operation is likley to cost in the region of £130k plus expenses and in view of this, we are hoping to raise £150k by February 2017. It would mean the world to us if you could donate, however small; share this page with others or assist with fundraising in some other way. This would help to give our daughter the quality of life she deserves.
Thankyou so much for your support
Macy's parents - Nicky and Mark