This blog is dedicated to raising awareness
about Dystonia and to aid in Julia's increasing medical expenses.
Julia was born in September 2011 with severe jaundice that lasted for several
weeks, requiring UV phototherapy.
As she grew older she had recurring bouts
of bronchitis between the ages of four and six months, and was diagnosed with
reflux and asthma. In January and February 2013 she experienced very high
fevers and frequent facial hypoxia.
At that point doctors were unsure of a diagnosis. A short time later, on March 29, 2013, she
suffered her first full body seizure.
For several months afterward she experienced mini-seizures involving
uncontrolled eye movements and episodes of “spacing out”.
To help pinpoint her difficult diagnosis Julia had to undergo several
uncomfortable and expensive medical tests at the Children’s Hospital of
Philadelphia (CHOP), including an EEG, Echo cardiogram, MRI, Spinal Tap,
and Gentic testing.
On May 21, 2013 she was officially diagnosed
with dystonia, a rare degenerative muscular disorder in children. Julia’s
dystonia will require her to have continual physical, occupational, and
developmental therapy. She recently received her first pair of ankle-foot
orthoses (AFO's) which help brace and control the position and motion of her
ankles. Julia's right foot only has 10% range of motion while her left
foot has 25%. Also, her right leg and
foot are much weaker than her left, and as a result she has trouble staying
upright without support. Her dystonia also makes her muscles fatigue at a much
faster rate than other children, so she has trouble walking and keeping up with
everyone else. In December she
is going to CHOP to be fitted for a medical stroller.
Despite her disability, Julia has an incredible smile and unbreakable spirit.
Julia loves her Big Brother Josh.
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