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Maria's Scoliosis Journey

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In April of 2016, our daughter Maria was diagnosed with AIS- Adolescent Idiopathic Scoliosis. She was 12 years old at that time.
At diagnosis, we were told that her spine is 28.0 degree Thoracic(upper) and 31.33 Lumbar(lower) curves.
We were told that she needs to wear a brace.
We followed instructions but despite of this her curves increased and in 6 months it her curves progressed to 39.5 and 42.15 degrees.
Her last x-ray was in April 2019 when we heard devastating news that her curves now reached 51.1 and 54.0 and that she needs a spinal surgery. We were in complete shock. This is how her spine looks now in 2019 and how it was looking in 2016.


Fusion surgery involves the insertion of long metal rods either side of her spine. Spine surgery is a major endeavor and one that is permanent . This picture below is an example of fusion surgery. Too many
patients of fusion surgery have reported long term chronic pain, disc and vertebrae issues, paralysis.
We would not accept permanently fusing her vertebrae without seeing if any other treatments were available.


After much more research we found that there is a new kind of surgery exists and it’s called VBT-Vertebral Body Tethering and essentially involves placing a flexible tether or cord, alongside screws which are screwed into individual vertebrae in her back and achieving correction over time. The picture below shows a tethered spine.
The surgery is less invasive, recovery is faster and mobility is maintained – and most importantly, patients remain pain free after the trauma of surgery has healed. 
We started to look if in Canada this surgery is available, and we found out that only a few places will do this surgery but only for immature spines. Since our daughter almost stopped growing and her spine reached the maturity, Canadian doctors will not accept her and she is not a candidate according to Canadian parameters.
We then began to look outside of Canada. Thankfully, there is a safe surgery available for older adolescents, however these surgeries are only offered in the US, Spain, Germany and Turkey. It’s called ASC- Anterior Scoliosis Correction and it also follows the same tethering approach as above. With older children, very often the vertebrae also need to be manually rotated and the disks need to be released – to allow the tether to work properly. It’s a more invasive surgery than VBT, but it’s still her absolute best shot at living a pain free life where she can retain full motion.
For more on the different approaches of tethering and fusion, you can find more info at the link below:https://www.treatingscoliosis.com/blog/fusionless-scoliosis-tethering-advantages 

After consulting surgeons in States, Barcelona, Germany, Israel, we decided that we have only 2 options: USA and Barcelona. Our final decision whether to choose one or another will be based on this fundraising campaign.  The surgery to save Maria’s spine will cost $150,000US.
Here is the page for her surgeons.
https://www.spineandscoliosis.com/ 
In Barcelona it will be 55,000 Euro. In order to operate in Barcelona we need at least 2 to 3 months to stay there for recovery that will add up to our cost.
We are planning to operate her this summer in June.
She will not be able to lead a happy, pain free life without this surgery.
Any donations you can give-big or small will help. We will be forever grateful if you can donate-and if you can’t please say a prayer for our girl.

Thank you,
Garo and Nina Injeyan
6476686819

Organizer

Khachatrian Nina
Organizer
Scarborough, ON

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