'Make my spine straight please'
Donation protected
Make my spine straight please – VBT Surgery
Mackenzie’s Journey and Diagnosis
We would like to take this opportunity to thank you for visiting our fundraising page, which we have setup to help us fund life changing surgery for our 10 year old son Mackenzie who has Scoliosis (a curvature of his spine).
Mackenzie is a very sociable and outgoing boy who enjoys all things ‘boys’; football, scooters, bikes, cars and wrestling around with his younger brother Regan.
Mackenzie was diagnosed with Scoliosis at 8 months old and was referred to a Spinal Consultant. The feelings of utter shock and devastation when we saw his first spinal X-ray of his little curved spine for the first time will stay with us forever. At that time the double curvature (lumber and thoracic) was small and a ‘watch and wait’ decision to see how the curve progressed over the next eighteen months was agreed.
At the age of 2 Mackenzie’s curves had progressed, the current NHS treatment is for patients at this age is to have a plaster cast jacket applied which is applied under general anaesthetic whilst on traction to get the best possible correction. The cast is kept on for 13 weeks then removed for a one week ‘break’. It is then reapplied for the same period and so on. Mackenzie had this treatment for 2 years however his curves progressed and he developed a third curve in the cervical area of the spine.
(Image: Mackenzie in a plaster cast)
At this point it was decided that Mackenzie should switch to being in a back brace, the first being a Milwaukee style which was absolutely awful, almost barbaric!. Mackenzie had to wear it for 20 hours a day and it was really tough for him. After 18 months or so his curves balanced out to about 35° in all areas so he switched to a Boston Brace which he continues to wear to date.
The braces are very uncomfortable and restrictive and Mackenzie has really struggled both physically and mentally.
(Image: The dreaded 'Milwaukee' brace)
He has been checked every six months with an X-ray to monitor his condition. In the last 6 months his curves have progressed at an alarming rate. Mackenzie’s check-up in December 2017 showed that his main thoracic curve was 50°. He had his 6 monthly check up a week ago (June 2018) and his main thoracic curve has jumped to a devastating 70° meaning that surgery is now going to be in the next 3 to 4 months, so much sooner than anticipated!
(Image: Left X-ray from Dec 2017; Right X-ray from June 2018)
As Scoliosis progresses it causes the ribcage to rotate and eventually starts to have an impact on the heart and lungs causing them to be squashed.
Treatment
The only option available to Mackenzie on the NHS at this moment is to have growing rods inserted into his spine which would eventually lead to spinal fusion surgery, a lengthy major operation. It is essentially a "welding" process. The basic idea is to fuse together the vertebrae so that they heal into a single, solid bone. This is achieved by using metal implants (screws, wires, and/or hooks) that are attached to each of the vertebrae in the spine and then connected to two titanium rods. A bone graft is carried out (typically from the pelvis) and placed over the implants hence leaving the spine a solid structure without flexibility and no option to grow anymore.
Vertebral Body Tethering – VBT.
Approximately two years ago, after being told that Mackenzie was likely to have fusion by the age of 11, we started researching alternative treatment as we could not envisage that outcome and we felt as parents we had to try and do more. We came across an article in the press about a child going to the US for ground breaking treatment known as VBT.
Since then there has been a lot of media coverage especially in the last year after a young girl who had severe Scoliosis appeared on the show Britain’s Got Talent.
VBT [vertebral body tethering] was developed in the USA. The aim of the procedure is to correct scoliosis while still preserving spinal flexibility. It is a much less invasive operation and continues to allow the spine to grow. It involves placing screws in each vertebra (bone of the spine) at the front of the spine over the length of the curve. The screws are connected by a flexible ‘cord’ to partially correct and tether the long side of the curve whilst allowing growth of the curve potentially producing further correction of the scoliosis.
VBT is only available in the UK at the moment on a self-fund basis.
Decision Time
In our opinion, we are lucky to be under the care of one of the leading specialist in this field in the UK and after months of research and very careful consideration we believe without a doubt that VBT is the best way forward for Mackenzie, giving him the chance to grow and remain as flexible as possible throughout the rest of his childhood and adolescent years.
As you can imagine the cost of the surgery is huge and way beyond our reach as parents in such a short time, which is why we are raising funds to secure this operation for our brave boy. It is hard to comprehend that we need to raise £65,000 to give Mackenzie the best outcome for his future.
Mackenzie’s Future
Mackenzie is a fun loving, bright and energetic young boy. He has a passion for rock music and an infectious bubbly personality.
Over the years it has been absolutely heartbreaking to see him persevere with his braces, and yet still manage to find a smile.
We are hoping that this amazing surgery is his light at the end of a very long tunnel and will give Mackenzie the chance of a normal ‘brace and pain free’ life.
As parents we strive to find the best possible healthcare for our children which as we are sure you can appreciate is stressful from time to time. We are grateful for our NHS system and Mackenzie has had some wonderful care over the years from these amazing professionals and we hope that in the future this pioneering surgery will be made available to other patients in the UK.
Thank you so much for taking the time to read this, we cannot do this without your support and help so please do share this with as many people as you can. Over the coming weeks and months we are intending to organise fundraising events and you can follow these on:
https://www.facebook.com/MackenziesVBT/
Please, please share the links and tell everyone you know about Mackenzie’s journey.
All money raised will be put towards the cost of Mackenzie’s surgery and the associated costs.
In the event that we raise more money than is required we will donate to charities associated with Scoliosis. If the option for VBT ever becomes unavailable to Mackenzie all donations will be refunded.
It goes without saying that we are extremely grateful for any donation you are able to give, no matter how small. We welcome and encourage any ideas to help his cause, you are all helping us to achieve our goal to make this happen for Mackenzie.
Thank you again
Martin, Sam, Mackenzie and Regan xx
Mackenzie’s Journey and Diagnosis
We would like to take this opportunity to thank you for visiting our fundraising page, which we have setup to help us fund life changing surgery for our 10 year old son Mackenzie who has Scoliosis (a curvature of his spine).
Mackenzie is a very sociable and outgoing boy who enjoys all things ‘boys’; football, scooters, bikes, cars and wrestling around with his younger brother Regan.
Mackenzie was diagnosed with Scoliosis at 8 months old and was referred to a Spinal Consultant. The feelings of utter shock and devastation when we saw his first spinal X-ray of his little curved spine for the first time will stay with us forever. At that time the double curvature (lumber and thoracic) was small and a ‘watch and wait’ decision to see how the curve progressed over the next eighteen months was agreed.
At the age of 2 Mackenzie’s curves had progressed, the current NHS treatment is for patients at this age is to have a plaster cast jacket applied which is applied under general anaesthetic whilst on traction to get the best possible correction. The cast is kept on for 13 weeks then removed for a one week ‘break’. It is then reapplied for the same period and so on. Mackenzie had this treatment for 2 years however his curves progressed and he developed a third curve in the cervical area of the spine.
(Image: Mackenzie in a plaster cast)At this point it was decided that Mackenzie should switch to being in a back brace, the first being a Milwaukee style which was absolutely awful, almost barbaric!. Mackenzie had to wear it for 20 hours a day and it was really tough for him. After 18 months or so his curves balanced out to about 35° in all areas so he switched to a Boston Brace which he continues to wear to date.
The braces are very uncomfortable and restrictive and Mackenzie has really struggled both physically and mentally.
(Image: The dreaded 'Milwaukee' brace)He has been checked every six months with an X-ray to monitor his condition. In the last 6 months his curves have progressed at an alarming rate. Mackenzie’s check-up in December 2017 showed that his main thoracic curve was 50°. He had his 6 monthly check up a week ago (June 2018) and his main thoracic curve has jumped to a devastating 70° meaning that surgery is now going to be in the next 3 to 4 months, so much sooner than anticipated!
(Image: Left X-ray from Dec 2017; Right X-ray from June 2018)As Scoliosis progresses it causes the ribcage to rotate and eventually starts to have an impact on the heart and lungs causing them to be squashed.
Treatment
The only option available to Mackenzie on the NHS at this moment is to have growing rods inserted into his spine which would eventually lead to spinal fusion surgery, a lengthy major operation. It is essentially a "welding" process. The basic idea is to fuse together the vertebrae so that they heal into a single, solid bone. This is achieved by using metal implants (screws, wires, and/or hooks) that are attached to each of the vertebrae in the spine and then connected to two titanium rods. A bone graft is carried out (typically from the pelvis) and placed over the implants hence leaving the spine a solid structure without flexibility and no option to grow anymore.
Vertebral Body Tethering – VBT.
Approximately two years ago, after being told that Mackenzie was likely to have fusion by the age of 11, we started researching alternative treatment as we could not envisage that outcome and we felt as parents we had to try and do more. We came across an article in the press about a child going to the US for ground breaking treatment known as VBT.
Since then there has been a lot of media coverage especially in the last year after a young girl who had severe Scoliosis appeared on the show Britain’s Got Talent.
VBT [vertebral body tethering] was developed in the USA. The aim of the procedure is to correct scoliosis while still preserving spinal flexibility. It is a much less invasive operation and continues to allow the spine to grow. It involves placing screws in each vertebra (bone of the spine) at the front of the spine over the length of the curve. The screws are connected by a flexible ‘cord’ to partially correct and tether the long side of the curve whilst allowing growth of the curve potentially producing further correction of the scoliosis.
VBT is only available in the UK at the moment on a self-fund basis.
Decision Time
In our opinion, we are lucky to be under the care of one of the leading specialist in this field in the UK and after months of research and very careful consideration we believe without a doubt that VBT is the best way forward for Mackenzie, giving him the chance to grow and remain as flexible as possible throughout the rest of his childhood and adolescent years.
As you can imagine the cost of the surgery is huge and way beyond our reach as parents in such a short time, which is why we are raising funds to secure this operation for our brave boy. It is hard to comprehend that we need to raise £65,000 to give Mackenzie the best outcome for his future.
Mackenzie’s Future
Mackenzie is a fun loving, bright and energetic young boy. He has a passion for rock music and an infectious bubbly personality.
Over the years it has been absolutely heartbreaking to see him persevere with his braces, and yet still manage to find a smile.
We are hoping that this amazing surgery is his light at the end of a very long tunnel and will give Mackenzie the chance of a normal ‘brace and pain free’ life.
As parents we strive to find the best possible healthcare for our children which as we are sure you can appreciate is stressful from time to time. We are grateful for our NHS system and Mackenzie has had some wonderful care over the years from these amazing professionals and we hope that in the future this pioneering surgery will be made available to other patients in the UK.
Thank you so much for taking the time to read this, we cannot do this without your support and help so please do share this with as many people as you can. Over the coming weeks and months we are intending to organise fundraising events and you can follow these on:
https://www.facebook.com/MackenziesVBT/
Please, please share the links and tell everyone you know about Mackenzie’s journey.
All money raised will be put towards the cost of Mackenzie’s surgery and the associated costs.
In the event that we raise more money than is required we will donate to charities associated with Scoliosis. If the option for VBT ever becomes unavailable to Mackenzie all donations will be refunded.
It goes without saying that we are extremely grateful for any donation you are able to give, no matter how small. We welcome and encourage any ideas to help his cause, you are all helping us to achieve our goal to make this happen for Mackenzie.
Thank you again
Martin, Sam, Mackenzie and Regan xx
Organizer
Sam Lock
Organizer
England
