Jonas, we've got your back!
Donation protected
Jonas was diagnosed with severe progressive infantile scoliosis when he was 5 months old. He was born with a tethered spinal cord, which was not diagnosed until it had caused his spine to grow into a 73 degree curve. He had surgery to release his spinal cord when he was 20 months old, but unfortunately this did not correct his scoliosis. #WeGotYourBackJonas
He began a series of trunk body casts in an attempt to correct the curve and prevent further surgery. He travelled to Shriners Hospitals for Children in Salt Lake City, Utah from Oklahoma for the specialized cast every 6 weeks to 6 months until his spine was no longer responding to the treatment.
Since casting he has been wearing special back braces 23 hours a day for the last 7 years to prevent the curve from progressing. For his braces he currently travels to Shriners Hospitals for Children in Philadelphia, PA.
Over the last year Jonas' back has stopped responding to the braces. It has progressed from 60-76 degrees over the last year. It will continue to progress and he hasn't even hit his major growth spurt yet! He is now 11 and has so much growth left!
Spinal fusion surgery is the only option to correct his curve according to his doctor. Spinal fusion is an extremely invasive surgery that involves putting screws and steel rods to hold the spine straight. Fusion surgery involves fusing multiple vertebrae into a single section. Not only is the surgery very invasive as they must cut through all the back muscles, the prognosis could be grim. There could be a chance of infection, blood transfusions, lifelong pain, very limited mobility of the fused section as well as a recovery that could take up to one year. Long term complications include rods that can break and this would mean revision surgeries to go in and remove and repair the broken rods, again having to cut into the back muscles.
We have been searching for alternative therapies that could spare Jonas such an invasive surgery. We traveled to different cities in North America looking for the very best treatment options for Jonas. By the Grace of God, we discovered that there was a team of highly experienced surgeons in New Jersey that were doing a new type of fusionless surgery called Anterior Scoliosis Correction (ASC).
According to the clinic’s website, Anterior Scoliosis Correction is a motion sparing scoliosis treatment where “Titanium pedicle screws are placed on the outside of the vertebrae that are causing the scoliosis; a rod-cord (white polyethylene-terephthalate flexible cord) is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curves show an immediate improvement right after surgery, and continued improvement over time as the spine remodels.”
The ASC surgery is a variant of another type of surgery called Vertebral Body Tethering (VBT) that is performed on young patients with scoliosis not as severe as Jonas'. However, we were relieved to find out that Jonas was a good candidate for the ASC procedure- not all scoliosis patients are. Dr. Antonacci and his team would perform the surgery at St. Peter’s University Hospital in New Jersey. The surgery will involve a less invasive entry through the side (anterior) of the rib cage. The surgeon will place a 4-inch incision under his arm, deflate the lung and then insert screws in his spine. He would then insert a flexible cord (tether), manually manipulate the spine and pull the cord tight to get the desired correction. (like braces for the spine). After the day long surgery, Jonas would need to spend around 5-6 days in the hospital for post surgical care. He would have restrictions on bending and lifting for six more weeks. Depending on his healing, he would be back to a normal routine within a couple of months. Post-operative treatment would include physical therapy and the use of a spirometer, to heal his lungs. A full recovery after a major surgery such as ASC, can sometimes take up to a year.
Unfortunately, this surgery comes at a high cost. The surgeon’s fees alone are $66,000. One of the main reasons for this is because the surgery is still relatively new (<10 years) and there is no long term (official) published data. Dr Antonacci and his team have done over 500 successful surgeries to date!
We are determined to make this dream a reality for Jonas and we are hopeful this surgery will help him to maintain mobility and flexibility in his spine so that he can continue to be active and do all the things he loves to do! While there are still many unknowns there are two things that are for certain. The first being that there is no cure for scoliosis. The second is that you cannot un-fuse a fused spine. With Jonas being only 11, there is a lifetime of medical advancements in his future. By leaving his discs and spine as natural as possible given the situation, we are hoping that we are providing options for his future while stabilizing his curve for now.
Why not just leave it and see what happens? This makes sense if Jonas had a curve less than 50 degrees. Unfortunately, the statistics show that curves over 50 degrees (like Jonas') will continue to progress. This could place undue pressure on his heart and lungs and cause additional stress on his body.
Jonas meets the criteria for ASC at this present time. His curve has progressed since last year and is 76 degrees now. Jonas is suffering from increasing back pain due to the severity and worsening of his curve and increasing pressure from his brace trying to stabilize it. In his adulthood, the condition of his vertebrae could change, arthritis or degenerative discs may set in, all taking ASC off the table and leaving him with fusion as his only option. As hard as this decision is, we feel that given all the options and current research, ASC is the best option for our son. Time is of the essence in order for him to have this life changing surgery. If we were to wait more than a few more months, his worsening curve may require not one but TWO separate operations to correct it. Whilst surgery was the last option on our minds 2 years ago, it is very clear that it is the best option for him now.
The doctors require a $35,000 non refundable deposit before booking a surgery date.
Jonas is a happy, adventurous, kind-hearted, caring, smart and handsome son who has shown great strength during this difficult time. It is our hope that the ASC surgery will give him the best healing for his spine and the best quality of life that he deserves. He is feeling anxious, yet positive about the upcoming surgery! We are already so proud of Jonas and know that he will overcome any obstacles that come his way. As his parents, we would like to thank you for your prayers and support to help make Jonas' dream of a fusionless surgery a reality.
With gratitude,
Jason & Hollie (Jonas' parents)
Links:
For those interested in more information comparing ASC/VBT to fusion surgery:
(https://www.treatingscoliosis.com/blog/fusionless-scoliosis-tethering-advantages).
Website for Jonas' surgeons:
https://www.spineandscoliosis.com
He began a series of trunk body casts in an attempt to correct the curve and prevent further surgery. He travelled to Shriners Hospitals for Children in Salt Lake City, Utah from Oklahoma for the specialized cast every 6 weeks to 6 months until his spine was no longer responding to the treatment.
Since casting he has been wearing special back braces 23 hours a day for the last 7 years to prevent the curve from progressing. For his braces he currently travels to Shriners Hospitals for Children in Philadelphia, PA.
Over the last year Jonas' back has stopped responding to the braces. It has progressed from 60-76 degrees over the last year. It will continue to progress and he hasn't even hit his major growth spurt yet! He is now 11 and has so much growth left!
Spinal fusion surgery is the only option to correct his curve according to his doctor. Spinal fusion is an extremely invasive surgery that involves putting screws and steel rods to hold the spine straight. Fusion surgery involves fusing multiple vertebrae into a single section. Not only is the surgery very invasive as they must cut through all the back muscles, the prognosis could be grim. There could be a chance of infection, blood transfusions, lifelong pain, very limited mobility of the fused section as well as a recovery that could take up to one year. Long term complications include rods that can break and this would mean revision surgeries to go in and remove and repair the broken rods, again having to cut into the back muscles.
We have been searching for alternative therapies that could spare Jonas such an invasive surgery. We traveled to different cities in North America looking for the very best treatment options for Jonas. By the Grace of God, we discovered that there was a team of highly experienced surgeons in New Jersey that were doing a new type of fusionless surgery called Anterior Scoliosis Correction (ASC).
According to the clinic’s website, Anterior Scoliosis Correction is a motion sparing scoliosis treatment where “Titanium pedicle screws are placed on the outside of the vertebrae that are causing the scoliosis; a rod-cord (white polyethylene-terephthalate flexible cord) is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curves show an immediate improvement right after surgery, and continued improvement over time as the spine remodels.”
The ASC surgery is a variant of another type of surgery called Vertebral Body Tethering (VBT) that is performed on young patients with scoliosis not as severe as Jonas'. However, we were relieved to find out that Jonas was a good candidate for the ASC procedure- not all scoliosis patients are. Dr. Antonacci and his team would perform the surgery at St. Peter’s University Hospital in New Jersey. The surgery will involve a less invasive entry through the side (anterior) of the rib cage. The surgeon will place a 4-inch incision under his arm, deflate the lung and then insert screws in his spine. He would then insert a flexible cord (tether), manually manipulate the spine and pull the cord tight to get the desired correction. (like braces for the spine). After the day long surgery, Jonas would need to spend around 5-6 days in the hospital for post surgical care. He would have restrictions on bending and lifting for six more weeks. Depending on his healing, he would be back to a normal routine within a couple of months. Post-operative treatment would include physical therapy and the use of a spirometer, to heal his lungs. A full recovery after a major surgery such as ASC, can sometimes take up to a year.
Unfortunately, this surgery comes at a high cost. The surgeon’s fees alone are $66,000. One of the main reasons for this is because the surgery is still relatively new (<10 years) and there is no long term (official) published data. Dr Antonacci and his team have done over 500 successful surgeries to date!
We are determined to make this dream a reality for Jonas and we are hopeful this surgery will help him to maintain mobility and flexibility in his spine so that he can continue to be active and do all the things he loves to do! While there are still many unknowns there are two things that are for certain. The first being that there is no cure for scoliosis. The second is that you cannot un-fuse a fused spine. With Jonas being only 11, there is a lifetime of medical advancements in his future. By leaving his discs and spine as natural as possible given the situation, we are hoping that we are providing options for his future while stabilizing his curve for now.
Why not just leave it and see what happens? This makes sense if Jonas had a curve less than 50 degrees. Unfortunately, the statistics show that curves over 50 degrees (like Jonas') will continue to progress. This could place undue pressure on his heart and lungs and cause additional stress on his body.
Jonas meets the criteria for ASC at this present time. His curve has progressed since last year and is 76 degrees now. Jonas is suffering from increasing back pain due to the severity and worsening of his curve and increasing pressure from his brace trying to stabilize it. In his adulthood, the condition of his vertebrae could change, arthritis or degenerative discs may set in, all taking ASC off the table and leaving him with fusion as his only option. As hard as this decision is, we feel that given all the options and current research, ASC is the best option for our son. Time is of the essence in order for him to have this life changing surgery. If we were to wait more than a few more months, his worsening curve may require not one but TWO separate operations to correct it. Whilst surgery was the last option on our minds 2 years ago, it is very clear that it is the best option for him now.
The doctors require a $35,000 non refundable deposit before booking a surgery date.Jonas is a happy, adventurous, kind-hearted, caring, smart and handsome son who has shown great strength during this difficult time. It is our hope that the ASC surgery will give him the best healing for his spine and the best quality of life that he deserves. He is feeling anxious, yet positive about the upcoming surgery! We are already so proud of Jonas and know that he will overcome any obstacles that come his way. As his parents, we would like to thank you for your prayers and support to help make Jonas' dream of a fusionless surgery a reality.
With gratitude,
Jason & Hollie (Jonas' parents)
Links:
For those interested in more information comparing ASC/VBT to fusion surgery:
(https://www.treatingscoliosis.com/blog/fusionless-scoliosis-tethering-advantages).
Website for Jonas' surgeons:
https://www.spineandscoliosis.com
Fundraising team (2)
Hollie Lee
Organizer
Tuttle, OK
Jason Lee
Team member