VBT surgery - a chance to keep spine mobility

Jodie Spencer is organizing this fundraiser.

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Joel has a chance to keep mobility in his spine - but we have to act fast. Our surgeon
suggests it needs doing within weeks.

My 16 year old boy has Scoliosis, his spine
started showing signs of scoliosis about 18months ago, but a couple of weeks ago we
discovered it had progressed majorly.

This painful curve results in constant back
ache and if not treated, will continue to have more severe effects on his health both
physically and mentally and also mobility.

Joel has been dealing with pain in his legs , feet and back for 2-3years prior to initial scoliosis discovery late in 2018 which at the time was
said to be extremely mild.

The following year led to a diagnosis of
Marfans Syndrome and the possible reason
behind all the problems and pain that we had
been trying to figure out through multiple
tests, bloods - you name it he’s just about
had it.

Joel was then dealt another blow, with
the marfans it can (and unfortunately has)
also affected Joels aorta which although at
last review is steady and now with the help of a daily beta blocker may slow the growth, it’s quite likely to continue to grow and also need surgery down the track.

About 6 in 10 people with Marfan syndrome
have scoliosis, but only 1 in 3 need medical
treatments for it.

Rapid growth in a child with Marfan syndrome can also make scoliosis increase which seems
to be the case with Joel.

And if that wasn’t already enough Joel could
now no longer continue playing the sports he
loved and would have limits to all physical
activity.

Doing NOTHING is not an option.

Spinal Fusion is the WORST option, he would be left permanently functionally limited.

There would be NO MOBILITY in the spine
and possible on going chronic pain- not relief
from it.

Sadly this has been recommended as the only option available by doctors in WA and not
until his curve has increased even more and to just wait and see if it does with it most likely to

So, the BEST option for Joel is a version of
VBT, Vertebral Body Tethering, a surgery
that works similarly to (teeth) braces on the
spine.

Due to the complexity there are very few
Drs that perform this in Australia and also are able to perform on someone Joels age and
degree of curve but we have been lucky to be put in contact with a wonderful Dr -
Mike Selby in Adelaide who has the
experience to perform VBT on Joels spine.
He believes he is a good candidate, but
also stresses that TIME IS OF THE ESSENCE.

VBT technique uses the body’s growth as a
leaver to straighten the spine, and at almost
17yrs old, Joel is possibly nearing the end of
his final growth spurt but again with marfans
this is also hard to predict and one silver lining is it looks like from his growth plates he still
has a bit of growing still to do.

What we want for Joel, is a happy ending to
the Scoliosis Journey. Life with full range of
movement and relief from the constant pain,
discomfort and to embrace life.

Even though he is limited to forms of physical activity and sport there is spinal movement
in just about anything we do on the daily and
at the moment just sitting, walking, sleeping
causes pain.

Please help us get there, we have a relatively
short window.

We have to act now or this window may close and our option may only be to travel overseas to Turkey or the US where they have greater margains and abilities to perform this or the
worst case scenario
Having to continue living with the constant
pain and waiting to see IF his curve
INCREASES to parimeters where fusion is
the only option is what we want to avoid.

So the pointy end of this is that to get this
done ASAP we just don’t have the means to
fund the full $7000-8000 needed ourselves
in the time we have to get to Adelaide to
cover the airfares, min 3 weeks
accommodation, living expenses and any
extras needed prior to the surgery -
thankfully the surgeons cost and hospital
(over $80000) will be fully covered by
whatever my private health pays
as Dr Mike has no surgical gap!

If you are able and can help us in anyway,
we would be eternally grateful

www.marfan.org