Support - Anterior Scoliosis Correction Surgery
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Rida is a 13-year-old caring and loving daughter and the youngest of 3 sisters. Her favorite thing to do is hang out with her elder sisters, friends or the company of pets. Always the most eager to help around the house with her parents and even at her Grandparents, Aunts’ or Uncles’ place when she is visiting them. An adventurous spirit that loves the outdoors, swimming and is a novice at horseback riding.
However, she has not been the same for some time now and can hardly enjoy her normal life as she has been diagnosed with Adolescent Idiopathic Scoliosis (AIS). Her spine had two bends thus effectively being shaped as the letter S. One bend was almost 83 degrees in the Lumbar area (lower half) and 63 degrees in the Thoracic area (upper half). We were absolutely devastated by the news.
We discovered that Anterior Scoliosis Correction (ASC) a Tethering technique, is the best option for Rida. Where her spinal cures can be corrected while ensuring full functionality of the spine. This will keep her discs healthy, lets her bones grow & mature and provides quality of life.
Doctor M. Darryl Antonacci and Doctor Rondal R. Betz. MD of Institute for Spine and Scoliosis are among the pioneering doctors performing ASC with Tethering based out of New Jersey, USA. After multiple discussions with them by the grace of Almighty God, we are relieved to know that Rida is a good candidate for ASC, but she does not have much time for so due to here severity. The doctors would perform the surgery at St. Peter’s University Hospital New Jersey.
As soon as we had identified the best treatment for Rida and started to look into logistics to get her this surgery at the earliest, everything was brought to a halt due to the COVID situation. None of the hospitals providing this treatment were providing any update and refusing to give any appointments due to their already present backlog.
Now that surgeries have started, we are in the process of trying to get funds and appointments in place to get Rida the help she needs. Unfortunately, the surgery comes at a very high cost. The surgeon’s fee and hospital charges are alone $175,000 USD. The cost of international travel, boarding lodging and additional unforeseen medical cost is besides this. Being in Pakistan we do not have the luxury of insurance to cover the cost of surgery.
For funds we are being supported by a few dedicated family members and a cousin of ours in England is managing this GoFundMe campaign for the cause, since funding portals like this don’t operate in Pakistan.
Rida is a happy, adventurous, kind-hearted, caring, smart and a beautiful gem of a daughter who has shown great strength during this difficult time. It is our hope that the ASC surgery will give her the best healing for her spine and the best quality of life that she deserves. She is feeling anxious, yet positive about the upcoming surgery! We are already so proud of Rida and know that she will overcome any obstacles that come her way.
As her parents, we would like to thank you for your prayers and support to help make Rida’s dream of a fusion less surgery a reality so she can go back to a full and fun life that a child her age should enjoy.
Rabia Kayani (Mother)
More Details to Answer Any Questions
Unfortunately there is not much awareness in Pakistan about Scoliosis in children and as a young child Rida at times had complained of fatigue and pain, but doctors would always attribute it to the child needing vitamin supplements, better diet, more exercise or the child just making excuses to avoid doing things she did not have interest in. Since there were no visible signs, we did not know what else to do and focused on what doctor’s suggested. Close to her 12th Birthday Rida even started walking with an awkward twist in her hips. Doctors again attributed it to a habit and posture issue that the child needs to consciously overcome, and parents need to remind her to “walk straight” to reinforce it. Doctor’s would refuse to have any X-rays done even if we suggested saying they are not needed and there is no need to expose the child to radiation.
How was it discovered
It was in September 2019 that Rida had an x-ray done for a dental procedure. The X-ray showed a portion of her shoulders also and we were surprised to see a bend in her spine. We immediately took her to an Orthopedic consultant and they did more X-rays & MRI to confirm that Rida actually had Adolescent Idiopathic Scoliosis (AIS). She probably had it for a while now and the growth spur she had as she reached 11 years of age had resulted in the curves getting so pronounced. X-ray’s showed that her spine had two bends thus effectively being shaped as the letter S. One bend was almost 70 degrees in the Lumbar area (lower half) and 48 degrees in the Thoracic area (upper half). We were absolutely devastated by the news.
The Search for Treatment
After a few days of shock, the family started actively discussing options for Rida with doctors. In a short period of 2 months she visited multiple hospitals in Pakistan from Agha Khan and Zia ud Din hospital in Karachi to CMH Rawalpindi and Shifa in Islamabad Gurki Trust/ Surgimed Lahore.
Surgeon explained that Rida’s condition is very sever. If not addressed in time the bends will put pressure on her kidney and lungs. The operation has been advised, as soon as possible. Doctors also explained that in Pakistan the only treatment possible is Spine Fusion (which has its well-established drawbacks). And in Rida’s extreme case with the two bends her entire Spine would need to be Fused whereas normally they fuse a few vertebras. This prognosis and the definitive impact on her future quality of life at just 13 years of age sunk our hearts. We were also told that in more medically developed countries there are other options / procedures available. Though costly, but “Tethering” of spine has promising results.
After their diagnosis and advise, we went through painstaking research and communicating with top Pediatric Scoliosis professionals around the world via emails, video calls and help from family living abroad who also visited these professional where possible. We got a lot of support and advise from multiple support group of parents all over the world who have children with similar condition such as https://www.facebook.com/groups/1287873647907498/.
What Rida Needs
We discovered that Anterior Scoliosis Correction (ASC) a Tethering technique, is the best option for Rida. Where her spinal cures can be corrected while ensuring full functionality of the spine. This will keep her discs healthy, lets her bones grow & mature and provides quality of life.
The Surgeons
Doctor M. Darryl Antonacci and Doctor Rondal R. Betz. MD of Institute for Spine and Scoliosis are among the pioneering doctors performing ASC with Tethering based out of New Jersey, USA. After multiple discussions with them by the grace of Almighty God, we are relieved to know that Rida is a good candidate for ASC, but she does not have much time for so due to here severity. The doctors would perform the surgery at St. Peter’s University Hospital New Jersey.
COVID Strikes
However as soon as we had identified the best treatment for Rida and started to look into logistics to get her this surgery at the earliest, everything was brought to a halt due to the COVID situation. None of the hospitals providing this treatment were providing any update and refusing to give any appointments due to their already present backlog.
Rida has a small window where medical procedure at USA offers her a chance to grow up as a normal child. In just a few months the Lumber cure has increased to 83 degree and Thoracic cure to 62 degree (and increasing) the bends are now right next to right lung and left kidney . She can be relieved of her sever back pain, disability to run, play or be like any other normal child.
Funding Details
The basic surgery cost is USD 175,000. Expenses for Rida’s treatment includes a lot more than just the surgery. We must consider the following due to which we have this campaign targeting GBP 200,000 which is approximately USD 250,000.
· Actual surgery cost. (USD 175,000)
· Any additional medical expenses since this is a complicated procedure. (USD 35,000 – 20% of hospital cost as indicated by doctors)
· 2 months post operation stay in the US. (USD 10,000)
· International Travel for 3 the child, mother and father. (USD 10,000)
· Review visit after 6 months & 12 months. (USD 20,000)
Being in Pakistan we do not have the luxury of insurance to cover the cost of surgery.
For funds we are being supported by a few dedicated family members and a cousin of ours in England is managing this GoFundMe campaign for the cause, since funding portals like this don’t operate in Pakistan. Funds from the UK will be directly transferred to the US.
However, she has not been the same for some time now and can hardly enjoy her normal life as she has been diagnosed with Adolescent Idiopathic Scoliosis (AIS). Her spine had two bends thus effectively being shaped as the letter S. One bend was almost 83 degrees in the Lumbar area (lower half) and 63 degrees in the Thoracic area (upper half). We were absolutely devastated by the news.
We discovered that Anterior Scoliosis Correction (ASC) a Tethering technique, is the best option for Rida. Where her spinal cures can be corrected while ensuring full functionality of the spine. This will keep her discs healthy, lets her bones grow & mature and provides quality of life.
Doctor M. Darryl Antonacci and Doctor Rondal R. Betz. MD of Institute for Spine and Scoliosis are among the pioneering doctors performing ASC with Tethering based out of New Jersey, USA. After multiple discussions with them by the grace of Almighty God, we are relieved to know that Rida is a good candidate for ASC, but she does not have much time for so due to here severity. The doctors would perform the surgery at St. Peter’s University Hospital New Jersey.
As soon as we had identified the best treatment for Rida and started to look into logistics to get her this surgery at the earliest, everything was brought to a halt due to the COVID situation. None of the hospitals providing this treatment were providing any update and refusing to give any appointments due to their already present backlog.
Now that surgeries have started, we are in the process of trying to get funds and appointments in place to get Rida the help she needs. Unfortunately, the surgery comes at a very high cost. The surgeon’s fee and hospital charges are alone $175,000 USD. The cost of international travel, boarding lodging and additional unforeseen medical cost is besides this. Being in Pakistan we do not have the luxury of insurance to cover the cost of surgery.
For funds we are being supported by a few dedicated family members and a cousin of ours in England is managing this GoFundMe campaign for the cause, since funding portals like this don’t operate in Pakistan.
Rida is a happy, adventurous, kind-hearted, caring, smart and a beautiful gem of a daughter who has shown great strength during this difficult time. It is our hope that the ASC surgery will give her the best healing for her spine and the best quality of life that she deserves. She is feeling anxious, yet positive about the upcoming surgery! We are already so proud of Rida and know that she will overcome any obstacles that come her way.
As her parents, we would like to thank you for your prayers and support to help make Rida’s dream of a fusion less surgery a reality so she can go back to a full and fun life that a child her age should enjoy.
Rabia Kayani (Mother)More Details to Answer Any Questions
Unfortunately there is not much awareness in Pakistan about Scoliosis in children and as a young child Rida at times had complained of fatigue and pain, but doctors would always attribute it to the child needing vitamin supplements, better diet, more exercise or the child just making excuses to avoid doing things she did not have interest in. Since there were no visible signs, we did not know what else to do and focused on what doctor’s suggested. Close to her 12th Birthday Rida even started walking with an awkward twist in her hips. Doctors again attributed it to a habit and posture issue that the child needs to consciously overcome, and parents need to remind her to “walk straight” to reinforce it. Doctor’s would refuse to have any X-rays done even if we suggested saying they are not needed and there is no need to expose the child to radiation.
How was it discovered
It was in September 2019 that Rida had an x-ray done for a dental procedure. The X-ray showed a portion of her shoulders also and we were surprised to see a bend in her spine. We immediately took her to an Orthopedic consultant and they did more X-rays & MRI to confirm that Rida actually had Adolescent Idiopathic Scoliosis (AIS). She probably had it for a while now and the growth spur she had as she reached 11 years of age had resulted in the curves getting so pronounced. X-ray’s showed that her spine had two bends thus effectively being shaped as the letter S. One bend was almost 70 degrees in the Lumbar area (lower half) and 48 degrees in the Thoracic area (upper half). We were absolutely devastated by the news.
The Search for Treatment
After a few days of shock, the family started actively discussing options for Rida with doctors. In a short period of 2 months she visited multiple hospitals in Pakistan from Agha Khan and Zia ud Din hospital in Karachi to CMH Rawalpindi and Shifa in Islamabad Gurki Trust/ Surgimed Lahore.
Surgeon explained that Rida’s condition is very sever. If not addressed in time the bends will put pressure on her kidney and lungs. The operation has been advised, as soon as possible. Doctors also explained that in Pakistan the only treatment possible is Spine Fusion (which has its well-established drawbacks). And in Rida’s extreme case with the two bends her entire Spine would need to be Fused whereas normally they fuse a few vertebras. This prognosis and the definitive impact on her future quality of life at just 13 years of age sunk our hearts. We were also told that in more medically developed countries there are other options / procedures available. Though costly, but “Tethering” of spine has promising results.
After their diagnosis and advise, we went through painstaking research and communicating with top Pediatric Scoliosis professionals around the world via emails, video calls and help from family living abroad who also visited these professional where possible. We got a lot of support and advise from multiple support group of parents all over the world who have children with similar condition such as https://www.facebook.com/groups/1287873647907498/.
What Rida Needs
We discovered that Anterior Scoliosis Correction (ASC) a Tethering technique, is the best option for Rida. Where her spinal cures can be corrected while ensuring full functionality of the spine. This will keep her discs healthy, lets her bones grow & mature and provides quality of life.
The Surgeons
Doctor M. Darryl Antonacci and Doctor Rondal R. Betz. MD of Institute for Spine and Scoliosis are among the pioneering doctors performing ASC with Tethering based out of New Jersey, USA. After multiple discussions with them by the grace of Almighty God, we are relieved to know that Rida is a good candidate for ASC, but she does not have much time for so due to here severity. The doctors would perform the surgery at St. Peter’s University Hospital New Jersey.
COVID Strikes
However as soon as we had identified the best treatment for Rida and started to look into logistics to get her this surgery at the earliest, everything was brought to a halt due to the COVID situation. None of the hospitals providing this treatment were providing any update and refusing to give any appointments due to their already present backlog.
Rida has a small window where medical procedure at USA offers her a chance to grow up as a normal child. In just a few months the Lumber cure has increased to 83 degree and Thoracic cure to 62 degree (and increasing) the bends are now right next to right lung and left kidney . She can be relieved of her sever back pain, disability to run, play or be like any other normal child.
Funding Details
The basic surgery cost is USD 175,000. Expenses for Rida’s treatment includes a lot more than just the surgery. We must consider the following due to which we have this campaign targeting GBP 200,000 which is approximately USD 250,000.
· Actual surgery cost. (USD 175,000)
· Any additional medical expenses since this is a complicated procedure. (USD 35,000 – 20% of hospital cost as indicated by doctors)
· 2 months post operation stay in the US. (USD 10,000)
· International Travel for 3 the child, mother and father. (USD 10,000)
· Review visit after 6 months & 12 months. (USD 20,000)
Being in Pakistan we do not have the luxury of insurance to cover the cost of surgery.
For funds we are being supported by a few dedicated family members and a cousin of ours in England is managing this GoFundMe campaign for the cause, since funding portals like this don’t operate in Pakistan. Funds from the UK will be directly transferred to the US.
Fundraising team (1)
Rabia Kayani
Organizer
England
Akram Kayani
Team member