Help Fund 7 yo Logan's Spinal Surgery

Logan waking up after his first cast. 


Logan was born March of 2013 - and we thought we had every new parent's dream - a happy, healthy baby. For a few months he grew, he ate, he met and blew past his milestones, and then it came time to sit upright.. and he had a lean. We thought it was a balance issue, but it never self-corrected. At 8 months old, we took Logan to the doctor and found he had a very large spinal curve - and was diagnosed with Infantile Progressive Scoliosis - We don't know why this happened, we don't know what caused it.  His spine just started to curve, and wants to keep going. We suspect, but have not yet been able to confirm yet, that he has Ehler's Danlos Syndrome, (Mom has it too). Many kids with EDS have scoliosis early on. 

At a year, we had an MRI done under anesthesia - it showed us the detailed curve (at 60 degrees) but no definite reason why. He started treatment at a local Richmond, Va. hospital, which included them putting him on a table (that looks a lot like a medieval torture stretching rack), under anesthesia, forcibly straightening his spine, then wrapping him up in a body cast from armpit to hip bone. We got some correction, but nothing that truly held fast, a few days out of his cast, and he was back to our curvy little guy. 

His most recent x-ray. 10/28/20

For the next 4 years, we went through THIRTEEN more casts. We transferred hospitals, to a hospital in Philadelphia, 5 hours away. Each time we'd get a little correction, but the doctor warned us that we were 'kicking the can down the road' for surgery. We accepted it, and trudged along, missing time from work, putting our little guy under anesthesia repeatedly, missing time from school. 

Silly man showing us his "Happy Face" despite being encased in fiberglass webbing. 




At 5 we could no longer reliably get any good corrections from casts, so we were forced to stop, with his curve at 49 degrees. We've tried bracing, but his curve has been slowly progressing. At our last visit, he was at 65 degrees. We are getting to the point where we can no longer 'kick the can' any longer.  70 degrees is the cut off for our doctor to want to operate. The farther it goes, the more vertebrae have to be involved.


Logan and one of his buddies. 

We have two choices now. We can put Logan through growth-rod surgery. This involving opening him up directly beside his spine, implanting growth rods (called MAGEC rods) alongside it, anchoring it in place, to force his spine straight. Every 4 months we'll have to take him back up to Philadelphia so they can lengthen the rods (with magnets, done externally) to go along with his growth. 

Insurance will cover this. It is a reliable method of correcting scoliosis. The issues come when you factor in the probable Ehler's Danlos (EDS), which causes serious problems with healing, and his age. Growth rods have a 2-3 three year life span, and then need to be replaced. Logan, because he's so young, is looking at 2-3, possibly 4 sets of these, each requiring their own surgery, risks, and recovery. At the end, Logan will end up with a partially fused spine. Some of it fused by growing around the growth rods, and a large chunk fused by the doctors to hold his spine straight after removing the rods. 

Our second choice is why we need help. There is another surgery available. It is called Vertebral Body Tethering (VBT/ASC). The hospital Logan is currently treated at offers it, but they have very strict criteria and Logan is 'too young' by their standards. If he qualified, we would not be in this financial situation. There is another surgeon, the one who pioneered VBT/ASC surgery and got it FDA approved, and he has performed this surgery on kids even younger than Logan, and with far larger curves, with fantastic results.  

Instead of facing the likelihood of 5-6 major spinal  surgeries, (MAGEC rods have issues, they break, they cause skin problems, etc.), Logan would be facing JUST two. The original VBT, and the likely possibility of a revision much later in his childhood, after the majority of his growing is done. Even better, instead of a 12"+ incision, it is just a 4" incision in his side. Then there's the BEST part - NO spinal fusion at the end. He won't start out his adult life with his mobility and flexibility already limited.



The problem is insurance. Our insurance will cover the hospitalization, and everything up to the surgeon's fee. He's out of network, and they will pay only a tiny amount.

We're still waiting to hear what the bottom line will be. From what we've been told, the worst case scenario: We'll owe $50,000 for just this surgery, then face another later, 6-8 years down the road. The amount is staggering to us, but if we have even the chance to turn 5-6 surgeries, each with a week stay in the hospital, and the pain of recovery, into just 2, maybe even one.. We have to try. 

We're going to do everything in our power to raise this money by taking equity from our home, savings, etc. but Mom is disabled, and the financial burden of the family is already carried solely by Logan's Dad.  

We need help to cover the costs of the surgeon's fee.  We need help to cover the costs to treks up and down to New Jersey, and the costs of the stay when the time comes for the surgery. He'll be in the hospital at least a week. Anything that is donated will be used for that purpose. If we cannot raise it all, and are forced to go with the MAGEC rod surgery, the money will go to the same medical costs, just in a different direction. (Costs of staying in the hospital and future care.) 

Logan and his best buddy, his kitten, "Nintendo" 

Throughout all of this - Logan has shown us what true strength is. From the first time he woke up with this.. THING on him.. he had to learn to balance again with a new center of gravity and a cast that added 20% to his body weight at first. He'd stumble, and fall, but even at 14 months old, he'd get up, dust himself off, and try again. He had to learn how to do things again, as a toddler, without being able to bend at the waist. It has NEVER stopped him for a second, and he has remained our happy, loving, guy. If anything we think it has made him more determined. 
He rarely wanted any help, preferring to figure things out for himself, but he knew when it was time to ask.. and taking a page out of his book, we realize that we need help to help him. 


Chillaxin' waiting for the Doc. 

We would greatly appreciate any help that you can give us towards helping our son get the best chance at living a life with as few problems related to scoliosis as we can possibly give him. This economy isn't fabulous, and we understand that. If you cannot help financially, sharing on social media would mean a great deal to us.