Femoral Facial Syndrome
Femoral Facial Syndrome is a rare disorder characterized by underdeveloped thigh bones (femurs) and unusual facial characteristics. It presents with a very broad range and variety of symptoms. Namine’s diagnosis of this disorder includes her Caudal Regression Syndrome, Pierre Robin Sequence, and Double Inlet Left Ventricle Heart Defect.
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New foot braces
Namine recently got fitted for new AFOs. She used them for the first time in therapy today.
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Basketball and tennis
Namine had a full day of sports!
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Braces
The day has come: Namine has her braces. Well, mostly.
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Meeting with the dental surgeon
During a consult today, Namine proved to be her own best advocate.
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Strength exercises in basketball
Namine’s coaches have her working on arm strength.
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Teeth spacers
Namine had a dental appointment to get spacers before she finally gets braces.
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Basketball and soccer
Namine had a full day of sports!
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Namine’s first play
Namine took part in her school’s production of Romeo & Juliet.
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Wheelchair soccer
Namine got to try out a new sport today, thanks to the YMCA Miracle League.
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Dental checkup
You’d think that just a checkup and x-ray prior to getting braces would be pretty standard, right? Yeah, you’d think so, but you’d be wrong.
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On being different
We were just finishing up the movie Hellboy.
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Inaccessible bathroom
I don’t know what the women’s bathroom was like, but the men’s at this particular restaurant was not accessible.