A FAMILY from Winnington is desperately trying to raise £42,000 in a race against the clock for surgery to correct the curvature to their daughter's spine.
Agnieszka Latos-Nadstoga has created a fundraising page in an attempt to raise funds for her 13-year-old daughter Zuzanna, who was diagnosed with severe idiopathic scoliosis.
This is a condition which has caused her spine to be curved and twisted at the top and bottom, with a 50 degree curve to her thoracic and an 81 degree curve to her lumbar.
Without surgery, the teenager's condition will continue to deteriorate and will lead to eventual disability.
"In March 2020, I noticed a hump on Zuzanna’s lower back," Agnieszka explained.
"We made an appointment with the GP and she was referred to see a specialist.
"We saw a specialist consultant in September and her x-ray showed a large double curvature to her spine and she was diagnosed with severe adolescent idiopathic scoliosis.
"Severe scoliosis is defined as a spine curvature larger than 40 degrees and we were told that the only possible treatment for her condition was surgery.
"Zuzanna’s scoliosis is progressing very rapidly.
"Usually the progression rate in an adolescent patient is about one degree a month.
"In September 2020 the x-ray showed a 64 degree lumbar curve and a 42 degree thoracic curve.
"In February 2021, the lumbar curve increased to 75 degrees and the thoracic to 46 degrees.
"Zuzanna’s most recent x-ray from March 2021 shows an 81 degree curve to her lumbar - it increased six degrees within three weeks - and 50 degree curve to her thoracic.
"We were told that she needs to urgently undergo surgery to correct the curvature.
"We are in a race against the clock now in order to avoid any more curving of her spine and more damage to her body."
Zuzanna's family are raising funds for Vertebral Body Tethering (VBT) surgery, which is not available on the NHS.
The only NHS-funded treatment available is spinal fusion which fuses the vertebrae to create one solid, inflexible bone.
This would severely limit Zuzanna’s flexibility and day-to-day-movement for the rest of her life.
Unlike fusion, VBT surgery is less invasive and allows for continued growth and mobility of the spine, as well as a quicker recovery period and fewer complications.
"In the UK St George's Hospital in London was doing this operation on the NHS for a short period of time, but stopped in 2017, when the NHS withdrew funding," Agnieszka said.
"Now, this surgery is available at this hospital on a self-pay basis and for a double curve it costs over £70,000.
"In Europe I believe there are only three hospitals where VBT surgery is done - in Spain, Germany and Turkey - and the cost is much smaller that at St George's Hospital.
"We have chosen to have the surgery done in Germany by a top spinal paediatric surgeon and the cost of this surgery is €47,000, about £42,000.
"Raising the money for the surgery would mean so much as it will enable Zuzanna's spine to remain flexible throughout her life.
"Zuzanna has started to experience pain on a regular basis, which is impacting on her ability to participate in many of the activities that she enjoys.
"As Zuzanna’s parents, we only want for our daughter the opportunity to live a full and pain-free life.
"We are desperate to try to leave Zuzanna’s spine in a natural state and not restrict her mobility at such young age.
"VBT is a life-changing surgery, which will make a huge and positive difference to the quality of Zuzanna’s life.
"In order for the surgery to go through on the May 19, we need the appropriate funds by April 26."
Visit uk.gofundme.com/f/zuzannas-lifechanging-spinal-surgery.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules hereLast Updated:
Report this comment Cancel