Emma's Voice: As parents, we take such pride in
watching our children achieve
their developmental milestones
throughout their lives. It feels so reassuring
to observe them acquire skills such as
crawling, walking, and talking, with little
One of the many joys of parenthood is to
begin to communicate with their family.
Ema, a local girl, is no different - she was
developing just as expected, until her
parents noticed skills she once had were
regressing.
Ema was born a healthy baby weighing
6lbs 9oz. Her mother had a normal
pregnancy, without complications. She
was the family's first child and was
developing in a typical manner. As Ema
started to approach her 1st birthday, her
parents noticed regression in skills, turning
motor skills for movements, abnormal hand
movements, breathing problems, and loss
of beginning communication skills.
Both parents knew that this was not typical,
and initiated their search for an answer
to determine the cause for the sudden
regression in their beautiful baby girl’s
development. Initially, Ema was believed
to have Autism. However, her parents felt
Jennifer Colombo, M.S., CCC-SLP
Owner of Therapeutic Potentials, Inc.
www.TPIKids.com
this was not an accurate diagnosis,
so they traveled to Johns Hopkins
All Children’s Hospital in Saint
the pediatric specialists.
At this visit, Ema was officially
diagnosed with Rett Syndrome,
and developmental disorder that
affects the way the brain develops,
causing a progressive inability to
use muscles for body movements
and speech. It occurs almost
exclusively in girls.”
Once Ema was diagnosed, her
parents and therapists were
dedicated to helping her achieve
her highest potential in every aspect
of her life. On a weekly basis, she
attended physical, occupational,
speech, and even therapeutic
horseback riding (hippotherapy).
She continued to make progress in
all areas, but she was considerably limited
on what she could communicate.
As girls with Rett Syndrome do not have
the ability to move their arms and hands
automatically, they are unable to use
sign language. Ema’s only means of
communication was an eye gaze board
with four to six pictures at a time.
If Ema wanted to tell someone what she
wanted to play with, she would have to
look at the picture of the toy she wanted.
This was extremely limiting, especially
since Ema is such a bright, young girl who
has so much to say, but can’t because
her muscles for speech are not able to
function.
Everyone in Ema’s life knew that she had
so much more to say, so the process
device that allowed her to communicate.
In December 2015, just in time for the
– which allowed her to use her own eyes to
look at the screen icons, that would then
talk for her.
at a picture of her mother and told her,
the sky was the limit for Ema’s ability to
communicate. She now uses the device
to express all her communication needs.
Ema does her homework/academics,
plays with her friends, reads books to her
younger siblings, and tells us her likes
and dislikes. Now that Ema has her voice,
there's no stopping her - she is a brave,
smart, little girl with a lot to say.
If you would like to learn more about
treatments and cures, please visit:
https://reverserett.org/
Speech Language Pathologist
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