The standard procedure, covered by insurance, to correct scoliosis in spinal cord injury children is to put "magic rods" in them until they are old enough to have their spine fused. The metal rods will restrict movement, making movement and basic life tasks even more difficult for someone with a SCI. The rods replacement procedure is irreversible and prevents any benefits from future medical advances. It also will only correct his spine by 20 degrees.
As a parent, I decided that I couldn't do this to my child. I knew there had to be another way. I researched, traveled to 3 different states/doctors. The first two doctors had the same suggestion, to put magic rods in him. They also told me there is a high probability he won't walk after the surgery because it will restrict his movement, which he needs for the leg weakness. The doctor in NYC also told me that he would prefer I do it closer to home, even though he has done the most of these surgeries (43) because the rods will likely results in complications, including painful brakes of the rods, requiring surgical corrections. So basically put the rods in to stop the spine from curving, but you are now going to deal with lots of complications and he won't be able to walk. The third doctor from the Institute for Spine and Scoliosis in New Jersey agreed that the rods would be terrible for Jackson. Thus, Dr. Betz and his team in New Jersey would do a surgery that uses a cord similar to a bungee cord to correct his spine. It also allows him to move his body, so he can continue to walk, and it is not permanent. The complications are minimal.
After hearing about this unprecedented surgery, and talking to other families that have had this done, we were elated and should have known that it was too good to be true. A month ago they called to tell use our portion of the surgery, $50,000.00. We cannot even make an appointment for the surgery until we put $30,000.00 down. They do not participate with any insurance companies, so this amount is set.
At this point we feel completely overwhelmed. I cannot put the rods in Jack and tell him that all of his hard work is for nothing, because this surgery isn't covered by our insurance. Asking for help is very difficult for me, and we have always managed to pay for his medical/travel bills to his appointments across the east coast. Everything that has come our way we have managed to figure it out. I have applied for grants, written letters to everyone who is involved with SCI that could possibly help, and I am continually turned down.
$50,000.00 is beyond what we are capable of and are hoping that we can get some help to pay for this surgery for Jack. If you are able to donate we truly appreciate it, and if you are unable I understand too.
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