What can be done?
The family has meet with top surgeons in Philadelphia and New York for surgical planning. The standard scoliosis surgical treatment is a spinal fusion, which “fuses” the spine into position, utilizing metal rods and screws. Due to the girls petite frames (they have A LOT of physical growth remaining) this procedure is not ideal because once the spine is fused, the torso will not grow any further and they will lose a significant amount of flexibility in their backs. Also, there is a tremendous amount of blood loss for a full fusion and with the girls blood disorder, this is risky. A better surgical approach for the girls is called a “hybrid” procedure, where the thoracic (upper spine) will be fused, but the lumbar (lower spine) will have “anterior scoliosis correction” or “VBT”. This technique utilizes a special cord and screws through the spine, which allows for continued growth and flexibility. The surgeon will also need to cut down several ribs and remove a few discs form their backs. The surgery will be 10 hours for each of the girls and require a team of surgeons, including the specialized orthopedic surgeon, thoracic surgeon, general surgeon and plastic surgeon. The girls will also require a hematology team, giving them special “factors” to minimize blood loss. To say that Melissa and Anthony are terrified is an understatement. The girls will remain in the hospital for a week (where they will have a pain pump) and then an additional 1-2 weeks in New York, before they can return to Florida. The recovery will be long and difficult, the first few weeks being the most painful. They will need around-the-clock care and they will be homeschooled for the remainder of the school year.
Why do they need help?
Melissa and Anthony, have excellent health insurance but unfortunately the specialized surgeons who perform these procedures, DO NOT TAKE INSURANCE. These surgeons are the best of the best, top 1% of specialized orthopedic surgeons IN THE WORLD. Due to the severity of the girls scoliosis AND their rare blood disorder, they must have the best care possible to keep them safe and give them the best long-term outcome. The enormous financial burden, of coming up with this amount of money in the next few weeks is heartbreaking. The girls are scheduled to have surgery, one day apart, the second week of February. Please help this family if you can. No one could prepare for something like this and this family needs your help now! Thank you in advance for visiting our page, donating and spreading the word.
**We are getting a lot of questions, so we thought it would be useful to answer them here:
Q. Why don’t the surgeons take insurance?
A. These surgeons in New York are in the top 1% of specialized scoliosis surgeons in the WORLD. Because of this, they don’t take “in-network” insurance. Why? Because when you are an “in-network” doctor, you are contracted with the insurance carrier to accept whatever amount of reimbursement they deem fit, pennies on the dollar, and they have no legal right to balance bill a patient. They have to accept whatever the insurance company pays them. These doctors are in high-demand due to their specialized procedures and patients fly from around the globe to see them. Therefore, they don’t need to “bow down” to contracted insurance reimbursement standards. Instead, they accept “out-of-network” insurance only. This allows them the legal right to balance bill a patient for whatever the insurance company doesn’t pay. These surgeons spend years and years in medical training and have 20-30+ years of experience. They are the best and deserve to be reimbursed adequately, therefore they choose this reimbursement schedule.
Q. Does the hospital that this will take place take their insurance?
A. Yes, thank GOD! The hospital is “in-network” with the family’s insurance plan. It will cover the hospital stay, anesthesiologist, hematology team and several other surgeons who will be participating in this procedure. This is huge, as they have been told that the hospital bill itself will probably amount to roughly $700,000 EACH!!
Q. Did you try a non-profit hospital, such as Shriners?
A. Yes. Shriners Hospital for Children in Philadelphia (the best!) was their first stop! Unfortunately, due to the complexity of the girls curvature, their only surgical recommendation at Shriners was a FULL FUSION. This procedure fuses the spine in place, not allowing for any continued growth in the torso. This is not an option for the girls because they are very skeletally immature and have a lot of growth remaining. In addition, the amount of blood loss is much more with a fusion (not a good option with the girls blood disorder) and would they lose a large amount of flexibility.
Q. Why did they choose this doctor?
A. The family consulted with the BEST surgeons in the world in both NYC and Philadelphia. The surgeon they choose, gave them the best surgical plan, utilizing a “hybrid” procedure. This highly specialized “hybrid” procedure is not an option with most surgeons. The procedure will allow continued torso growth for the girls and maintain a large amount of flexibility.
Q. What type of blood disorder do the girls have?
A. They have a factor 7 and 11 deficiency. They will have a hematology team giving them special factors the day before surgery, during surgery and after. The surgeon will also utilize a procedure called “cell saver”, which is a medical procedure involving recovering blood lost during surgery and re-infusing it into the patient. The girls will have chest tubes in for several days, which will help drain fluids and any blood collections.
Q. Will a fundraising event be held?
A. Yes! On Tuesday, February 6th from 7:00-9:00pm at the Mayacoo Lakes Country Club, located at 9697 Mayacoo Club Dr, West Palm Beach, Florida 33411
To help this wonderful family you are invited to an exciting evening of fun and surprises, including both silent and live auctions, with all proceeds benefiting the DiMartino Medical Fund. Special appearance by Sam Simon who has performed throughout the US and in over 30 countries.
Tickets are $20 per person $30 per couple in advance or $25 per person $40 per couple at the door. Advance tickets come with one free raffle ticket. (Additional tickets will be sold at the event.)
Complimentary appetizers will be available. Cash bar. For advanced tickets,
Q. Have you gone to the media about this to spread the word?
A. Yes! Channel 5 News covered the girls story. If you missed it, here's the link. https://www.wptv.com/news/region-c-palm-beach-county/wellington/teenage-twins-prepare-for-high-risk-spine-surgery
Q. Besides donating, what else can I do for this family?
A. Great question! You can continue to spread the word and share, share, share on social media. In addition, if you have any direct media contacts, we would greatly appreciate an introduction or the forwarding of the girls story.
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