On December 24, while children across the country were excitedly waiting for Santa to arrive, one appeal broadcast on STV captured all our hearts. Christmas may now be long gone, but for Macy Robertson from Dunbar, her dream to run, dance and move like other children is still just beyond her grasp. Here, Macy’s mum Nicky explains why the rest of her daughter’s life will be determined by the charity and kindness of the community…
Macy was diagnosed with scoliosis when she was just six years old. It was a total shock as I had taken her to see the doctor because she had a virus, where I just happened to mention that she had a sore back. X-rays then confirmed that she had severe scoliosis [abnormal twisting and curvature of the spine]. We were told that Macy would have to wear a brace for 20 hours a day to prevent her condition from becoming worse, and buy her some time before she would have to have surgery. The surgery offered by the NHS in Scotland is spinal fusion which will involve inserting metal rods into her spine and 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, and it will severely limit her flexibility and movement.
For three years, Macy has worn a brace for 20 hours every day. The first two years were difficult, but by the third year in 2016, wearing a brace had taken too much of a toll on her confidence and 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. Like many children, Macy is strong willed and decided she had had enough. It wasn’t just the physical distress, particularly in warmer months during summer, but the emotional effect on her wellbeing. She no longer wanted to be different from her friends and was embarrassed. Every day was a nightmare and I believe that if we had continued to force her to wear the brace it would have had a devastating effect on her mental health. We had done everything we could, but it just got to the point where it was impossible.
The situation became so unbearable that I began to research other options for a second opinion. We had always been told that there were no other options available to us, but my research uncovered a private consultant in the South of England who gave us hope. We went to see him in August and he advised to stop the brace use with Macy, as it was causing her such emotional distress, however the result was of course that Macy’s condition deteriorated rapidly and we were informed last November that she would have to have the spinal fusion operation.
The alternative procedure which we had gone to see the consultant in England about – and which we had hoped would be our miracle – is vertebral body tethering or VBT. Unlike spinal fusion, this procedure involves surgeons placing screws in the affected vertebrae attached to a flexible cord to pull the spine in a straighter position, a bit like one of those sweetie necklaces on an elastic string. This realigns the spine so that it can continue to straighten with growth and maintain flexibility. The surgery is also much less invasive meaning less blood loss, less risk of infection and a faster recovery time.
The decision for us on which surgery to choose was a complete no-brainer as they say, however luck was not on our side. Devastatingly, red tape around the medical re-classification of VBT means private consultants are unable to offer this treatment in the UK for a period of six to 12 months from October 2016. Macy however doesn’t have the option to wait.
Like most 10-year-old children, my daughter loves gymnastics, trampolining and hip-hop and I just couldn’t concede that all these things she loves dearly would be taken away from her forever. Further desperate research then uncovered new hope in America. This December we hurriedly raced to New Jersey on the East Coast for the last available appointment before Christmas with Doctors A, B & C (Dr Antonacci, Dr Betz & Dr Cuddihy) of the Institute for Spine & Scoliosis.
This team have more experience carrying out the procedure than anyone else in the world and thankfully we had a very positive consultation with them. They confirmed what the NHS consultants had told us, that Macy needs surgery and she needs it now. Not only were they concerned about her scoliosis (there are three curves in Macy’s spine, one of which is over 60 degrees) but they were even more concerned about the rotation in her spine. Macy’s rib cage is basically rotating around inside her, causing a significant hump in her back. If Macy has a growth spurt, it could have disastrous consequences for her. But now there is a light at the end of a very dark tunnel again – with only one huge obstacle in our way to help our little girl – including our travel expenses the operation will cost £150,000.
Due to her urgent need for surgery we had to commit to a date of February 2, 2017 giving us only a matter of weeks to fundraise. If we do not reach our target before this date, we have lost the fight for Macy as the cost must be paid in full prior to surgery. From a medical point of view, we simply cannot wait any longer.
Our friends, family, the community of Dunbar and the people of Scotland have been incredible. So far we have managed to raise just over half of our target in 36 days and we thank everyone who has helped us from the bottom of our heart. However we still have a long way to go and only a few short weeks. If you can help us in any way change our daughter’s life – a small donation, joining in with a fundraising event or just helping us spread the word by sharing on social media – we will be eternally grateful. Macy’s time is running out.
It would mean the world to the Robertson family for any donation, however small, to help to give Macy the quality of life she deserves.
Donate at gofundme.com/fund-spine-surgery-for-macy or join in one these fundraising events. Everyone is welcome:
Friday 27 & Saturday 28 January
Pop Up Shop, selling good quality clothes, books, toys, CDs / DVDs etc. at the Be Green Shop, 55 High Street, Dunbar from 10am-5pm
Friday 3 February
Enjoy a concert of three bands covering rock to folk music at Corn Exchange, Haddington from 7pm-11pm
Saturday 25 February
Children’s Talent Show at the Strawberry Barn, Dunbar. Knockout Rounds 2pm-6pm. Finals & Family Disco 7pm-11pm
Visit the Facebook page LifeChangingOpMacy for tickets and further information.