This
is the story of our brave little 4 year old daughter, Bailey, who has
cerebral palsy. Bailey is kind, intelligent, and fiercely independent.
Even though her mobility is limited by a walker, she is determined to
do everything that everyone else can do, no matter what. Bailey dreams
of doing all of the fun things that peers her age are doing, such as
climbing on the monkey bars, swinging, rolling down a grassy hill,
riding a bike, sitting with her legs crossed in front of her,
exercising, and most of all…dancing. This desire has led us to reach
out to a neurosurgeon in St. Louis, MO who performs a life- altering
surgery called Selective Dorsal Rhizotomy (SDR). After doing loads of
research, and speaking to parents who have had this surgery on their
children, we have decided that this may be the best chance for Bailey,
to help her combat some of the painful, lifelong impairments caused by
this condition. Dr. Park has predicted that, after this surgery, Bailey
should be able to walk independently, across all environments which
would be a dream come true!!
A fighter is born
Bailey
was born on May 26, 2014 at 27 weeks gestation, weighing in at 2 lbs.
2.5 oz. and spent 2 months in the NICU. When Bailey was 1 month old, we
were informed that she had developed a bleed in her brain (diagnosed as
Periventricular Leukomalacia or PVL). She continued to grow and
develop but was pretty late in meeting some of her milestones (rolling
over, scooting, crawling, etc.). Just after her 1st birthday, she was
diagnosed with Spastic Diplegic Cerebral Palsy.
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| Bailey-1 day old |
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| First kiss from mama |
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| Bailey-1 month old |
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| Our family-July 2014 |
The Diagnosis
Cerebral
Palsy is a neurological condition that permanently affects muscle
control and coordination. Spastic diplegia affects the legs and arms,
making them stiff and contracted (spastic), although in Bailey’s case,
her legs are much more affected than her arms. At just past 2, she got
her first reverse walker, and has been on the go ever since.
With
CP, comes many challenges, including an endless battle with spasticity
(tightness, constant muscle spasms in her legs), making everyday things,
such as walking, sitting up independently, or even sleeping very
difficult. Through medications, botox injections, and countless hours
of physical therapy, she can now go to preschool and experience the
world with the use of her walker.
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| Bailey's 1st birthday |
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Enter Dr. Park—the life-changing operation
I
was introduced to the St. Louis Children’s Hospital Selective Dorsal
Rhizotomy group through a fellow CP mama on Facebook. It was through
this group that I found a kinship with a ton of parents that are dealing
with the same challenges that we have been dealing with, and found a
way to try and improve their child’s situation through Selective Dorsal
Rhizotomy or SDR.
SDR is a procedure that treats muscle
spasticity by cutting the nerve rootlets in the spinal cord that are
sending abnormal signals to the muscles. By reducing the spasticity,
the surgery can help improve walking patterns, help with potty training
(which in children with CP can take as long as 5-6 yrs), and can help
improve range of motion and functional mobility. The leading
neurosurgeon that performs this surgery is Dr. T.S. Park at St. Louis
Children’s Hospital. Dr. Park has performed thousands of these
surgeries and has trained many neurosurgeons on his techniques for a
less invasive surgery than has been offered in the past. Although there
are risks to such an involved and invasive surgery, the long term
benefits that it can provide are definitely worth the journey.
Here is where you come in…
A
major, life-changing surgery like SDR comes with a large price tag.
The overall expected cost of this surgery (and braces/equipment is just
over $46,000, which is WAY out of our budget. We are expecting our
insurance to pick up some of this, but since it is out of state, we
don’t really know how much they will cover. This is where we need your
help! As parents, we want to provide our children with as many
possibilities and opportunities for success as possible, and this is our
way of doing that for Bailey. We want her to be able to live a life
where she doesn’t have to rely on dangerous pharmaceuticals to get
through the day, or have to worry about the deterioration of muscles as
she gets older, and the pain this deterioration will cause.
For more information about SDR, please refer to the St. Louis Children’s Hospital website (
http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr), which explains what Dr. T.S. Park does for these amazing kids.
