Mermaid Dreams – Sophia’s Story – Scottish Rite Hospital


(soft music) – Hi friends, it’s me, Sophia, and it’s me at Scottish
Rite doing a video. – Sophia’s diagnosis is
what’s called amyoplasia, which is a form of what’s
called arthrogryposis. How are you gonna get that
jello into your mouth? The jello wants to be in your mouth. – Pretend like your gonna eat. – There you go! In that condition,
children are born with lack of varying amounts of
muscle. In particular, most of them have in-turned shoulders, extended elbows, flexed
wrists, and really severe thumb and palm positioning
and finger abnormalities. – The first surgery that
Sophia had, with Dr. Oishi, was the wrist surgery, that
allowed Sophia to use her hands so much better. I mean,
just for everyday living, it’s increased her ability
to do things so much better. – [Dr. Oishi] What are
you doing? Can I see? – For Sophia in upper extremities, she lacks the biceps
muscle that can give active flection to the elbow, and
everything has to be pushing against the side of a table
to get her hand to her mouth. To try to help this, we took
a portion of her triceps, and transferred it to make a biceps, and that can be very effective
in many of these children, if they have the indications for it, and it’s called a tendon transfer. – And when I was a baby,
I couldn’t even move. I can move now. – [Dr. Oishi] Sophia’s
first surgery was actually to straighten out her wrist
in that it was a severely flexed position, and that
gives them the ability to actually grab things
in a palm-to-palm fashion instead of a crossed fashion
which is very common in these children. And the second
surgery is really aimed at, again, trying to give
them an active flection of their elbow. – When I was a baby, I was stuck. My hands were curled up like this, and Dr. Oishi fixed it. I’m really brave. It rocks to be brave. – Sophia’s a great swimmer,
and it has increased her strength in the pool tremendously. No only has it done that,
but it’s also helped Sophia’s confidence tremendously. – I’m gonna be on the swim team. And I can go on my belly,
my back and swim across the pool all by myself and no help. – [Annette] Sophia considers
herself a mermaid because in the water, she’s equal to everybody. She has no disability in the water. She can walk in the
water like everyone else. She can do everything
and she can do it better. – I feel so different with the surgery. It’s like in my own world,
without being stuck! (laughter) (soft music)

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