Darnae's Scoliosis Journey - Time is of the essence!
Please help us - Darnae needs urgent surgery for Scoliosis to keep mobility in her spine.Southland
Thank you for stopping to read Darnae’s Scoliosis story.
In November 2018 Darnae’s world was turned upside down when it was discovered she had severe Idiopathic Scoliosis. Her parents took her to the GP, and she was sent for urgent x-rays the following day, which devastatingly showed that her spine was in the shape of an S, confirming Darnae had Scoliosis. After receiving her shocking diagnosis, she has amazed us all everyday with her positive attitude and her inner strength. Darnae is a very fit and otherwise healthy 12-year-old girl who is a naturally talented athlete with a passion for sports, especially Gymnastics and Netball. She is currently representing her school in their A netball team for her year level for the 2nd year.
Scoliosis is a condition in which a person’s spine is curved to the side and rotated making it a 3D condition. Only 4% of the population suffer from Scoliosis and the majority of sufferers are girls. Darnae's scoliosis was caused by a rapid growth spurt. Health problems that can occur from Scoliosis are back pain, balance & coordination issues, trouble breathing, cardiovascular problems and problems with nerve endings. The closer her curve gets to 80+ degrees it will affect her heart and lung capacity and her rib cage can start to strangle her heart and lungs.
In February 2019 the family saw an Orthopaedic specialist who told them that Darnae had a Thoracic curve of 66 degrees and that their only choice was a spinal fusion operation.
Spinal fusion is a highly invasive operation where they cut through her back muscles to open her back and place screws into the vertebrae, place 2 titanium rods down either side of her spine, it is finished by fusing her vertebrae together using bone grafts. This operation would result in Darnae's spine mobility being permanently limited. The prognosis in the long term is often not great and leaves many sufferers in daily pain, unable to bend their back, the spine is unable to grow any further, and the possibility of Osteoporosis, Osteoarthritis and disc degeneration. During the operation if the spinal cord shows any sign of distress, they will stop the operation and fuse her spine in place.
Spinal fusion surgery is not an option for Darnae because not only can it cause a number of health complications, it also carries the risk of paralysis or even death and there is no guarantees it will work.
Doing NOTHING is not an option. The longer she is left untreated it will continue to have more severe effects on her health and mobility.
After hours of research the family became aware of VBT and ASC surgeries. These operations are minimally invasive, preserve mobility and flexibility of the spine, allow the spine to grow, have less complications and a far quicker recovery time.
ASC is a procedure where titanium pedicle screws are placed on the vertebrae that are causing Scoliosis. A flexible tether is then attached to each of the screws. When the implants are tightened, it corrects and straightens the spine. The affected curves show immediate improvement right after surgery and continued improvement over time as the spine remodels.
The family travelled to Auckland to see a surgeon who has recently started performing VBT operations and were devastated to learn that the operation is unable to be performed in New Zealand due to the severity of Darnae’s curves.
In desperation the family reached out to VBT/ASC specialist Dr Olaverri in Barcelona. He has confirmed that Darnae is the perfect candidate for ASC surgery and has agreed to take her on as a patient. He believes he can get both of her curves down to around 10 degrees, de-rotate her spine and correct the rib hump which involves snipping a section out of 4 of her ribs. Recovery time is minimal taking up to 6 weeks with an average hospital stay of 5-7 days. After her 6 weeks check she will be cleared for the flight home and upon her return to New Zealand she will be able to resume school full time and return to her sports.
Dr Olaverri has told the family that time is of the essence, Darnae has been booked in for surgery on the 5th September. The cost of the operation alone is 50,000 Euros which when converted into NZD on the 11.6.19 it came to a total of $85,960.00 on top of this cost the family also have flights and accommodation costs.
We are asking you to please help us get our precious girl to Barcelona to have this life altering operation that will allow her to continue her life with no limitations. She will be able to continue to enjoy life as a normal carefree teenager. With this operation Scoliosis will hopefully become a distant memory.
Any donations no matter how big or small will help Darnae to have a healthy life. Your donation means more to our family than we could ever express, and we will forever be grateful to each and every one of you.
Tracey Daglish's involvement (page creator)
I am Darnae's aunty, I am helping to raise funds on the family's behalf as they prepare themselves for the huge journey ahead.
Use of funds
We are raising funds for Darnae's surgery, travel and accommodation while in Spain.
We have made it - Darnae is on her way to Barcelona today. There were lots of hugs and so many emotions at the airport, but most importantly we felt relief that she is on her way to getting the surgery she needs.
In true Darnae fashion she lead the way!
It is hard to believe all the planning, packing, emailing, booking, researching, fundraising etc is now behind us and the real hard work is about to begin.
Thank you so much everyone who has made this possible, it means more to us than we can ever express.
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This page was created on 12 Jun 2019 and closed on 25 Oct 2019.