Dunbar family's £150,000 bid to give daughter Macy Robertson ‘life-changing’ surgery

Macy Robertson was diagnosed with scoliosis – an abnormal twisting and curvature of the spine – four years ago, which saw her wear a brace 20 hours a day to prevent the condition from becoming worse.

However the youngster (pictured below), who is in P6 at Dunbar Primary School, struggled with the brace, which she only took off when swimming or at gym lessons at school.

Her mum and dad, Nicky and Mark, are now looking to raise £150,000 to allow for surgery in the USA, which would transform her life.

Already, kind-hearted county residents and members of the public from beyond have pledged more than £24,000.

Nicky, of Dunbar’s John Muir Crescent, said: “I don’t know what I expected when I started this fund and have never used Facebook in my life, but my husband Mark and I are both completely overwhelmed at the kindness and generosity of people.

“By the end of day three the fund stood at a massive £17,000 from around 250 donations and was trending. Everyone we know is sharing the page and the money is literally flooding in.

“We have had donations from friends and family that we know don’t have a lot of money coming in; we have had some very large donations from friends and family and we have had loads of people we don’t even know contributing.

“It is touching and humbling and we have been in tears on many occasions over the last few days.”

Nicky told the Courier that wearing the brace was impacting upon her daughter’s life so she has stopped using it.

She said: “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 and were advised that, given the negative impacts on Macy’s emotional wellbeing, she should discontinue brace treatment. Her condition has deteriorated rapidly and she needs surgery now, before she has another growth spurt.”

One of the options is ‘spinal fusion’, which would see metal rods inserted into her spine and the fusing of her vertebrae so that her spine becomes one solid bone structure.

Nicky, who works as a senior housing strategy officer with East Lothian Council, was keen to avoid that route and said: “She will not grow any more in height, although her limbs will continue to grow.

“It will severely limit her movement, which is so important to her. She won’t be able to bend down and touch her toes or tie her own shoes.

“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 and weeks of research, we found our miracle – vertebral body tethering or VBT.

“Unlike fusion, it allows for continued growth and mobility of the whole spine.

“It is the only procedure which will straighten Macy’s spine while allowing her to grow and remain flexible.”

The procedure, which would take place at the Institute for Spine and Scoliosis in Princeton, New Jersey, would see screws attached to the affected vertebrae and then to a flexible cord to pull the spine into a straighter position. That realigns the spine so it can continue to straighten with growth and maintain flexibility.

The surgery is less invasive than fusion, involving a five-inch scar and less risk of blood loss and infection, as well as a quicker recovery time and less muscle, bone and tissue damage.

The family met a private consultant in Southampton earlier this summer and had planned to then take Macy there for an operation.

However, Nicky, who is organising fundraisers in the New Year, added: “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. This decision could not have come at a worse time for us.

“Macy’s condition has deteriorated significantly in recent weeks and 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 VBT, but time is running out.

“We are committed to having this life changing surgery done for Macy and will do whatever it takes.

“The operation costs in the region of £130,000 plus expenses; we are hoping to raise £150,000 by February.”

To help, go to www.gofundme.com/fund-spine-surgery-for-macy