Stella Webster's Scoliosis Fund

Please consider showing your love and support to our beautiful friend, Stella! She is an inspiration to all who know and love her. She always has a positive attitude & so much love to give, despite her physical pain and challenges.  We are so very happy for her to have the opportunity for this incredible procedure. Join us in showing her all the love she so readily gives out to the world!! Below is Casey's story about the challenging journey they have been through...

Stella was born with a hemi-vertebra, which is one vertebra shaped like a triangle and not fully formed-
she's even missing a rib on one side! We didn't know this until a chiropractor caught it on an X-ray, but
that was just before her 11th birthday, and she was a healthy, active kid. Her curve was around 25
degrees but didn't seem to be affecting her negatively so we decided to just watch it.

Over the next year or so, Stella started shooting up in height, and her curve got much worse. It's
common for scoliosis, whether congenital or not, to progress very quickly during a growth spurt.
Scoliosis really only has two general treatments: surgery or bracing and physical therapy. We chose the
non-surgical route to start out with. We traveled to Wisconsin to learn Schroth physical therapy since
it's not available around Des Moines, unfortunately. Stella was a trooper learning the therapy. Then
came the customized brace, made in California, which needed to be worn 23 hours a day. Stella was
amazing at wearing her brace, and for the entirety of 7th grade she wore it to school, and while riding
horses, and in the heat of the summer where it made her overheat. It was harder for her to breathe,
eat, sit and sleep in that thing, much less deal with the body image issues all 7th graders face. It cut into
her skin and she had continuous bruising. It was a very difficult time, but she handled it with amazing
grace and maturity.

After a year of wearing the brace, her curve had not improved very much. She looked straighter thanks
to the physical therapy and the brace, but her curve had not improved, holding steady at around 49
degrees. Doctors typically recommend surgery for curves over 40 to 45 degrees. The only surgery
option for decades has been to fuse the majority of the spine in an invasive surgery using metal rods and
many many long screws, with either harvested or synthetic bone chips. Fusion has scary risks including

paralysis and blindness, and leaves the spine with very limited mobility. It also frequently results in
lifelong, chronic pain.

Then I learned about an incredible new approach to spinal surgery called Vertebral Body Tethering, or
VBT. This is actually a technique that has been around for 5 or so years, but initially was only considered
for kids with a lot of growing left to do. It has recently become possible for older kids to get this surgery
and have amazing correction of their spinal curve, while maintaining most of their flexibility in a less
invasive procedure.

When we found out about this, we knew this would be the best answer for Stella. It's an AMAZING
advancement for scoliosis, and we are so excited to have this option open up for her.

We are still struggling with insurance to get coverage for the procedure, but after nearly 3 months of
back and forth, we are so close to getting a surgery date! The pioneer of the procedure, and really the
only surgical team willing to do this surgery on someone of Stella's age and with her hemi-vertebra, is
located in New York, so we will have to fly or drive there and back.


This scoliosis journey is long and difficult, not to mention expensive. Expenses are really piling up and
the travel and time away from work for the surgery is going to take a heavy toll on our family.