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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Speed and movement in basketball
Namine is working on maneuvering her sport chair.
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Getting new equipment
We met with Namine’s rehabilitation doctor in an effort to improve her therapy equipment.
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Shooting baskets
Namine can do something this week that she couldn’t do even just last week.
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Free day at the zoo
Namine and her cousin had a great time at the zoo!
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Accessibility speech
Jessica, Namine, and I gave a talk at Children’s Hospital of Wisconsin on accessibility. ♿
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Arm pain
Namine was experiencing pain in her wrist again, so we took her in to see her bone specialist.
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Bowling with Miracle League
The YMCA Miracle League held a new sporting event: bowling!
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Stein’s Trick or Treat
Namine went trick or treating as a bee!
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Zachariah’s Acres
There was a walk/run/roll at Zachariah’s Acres on Saturday. We didn’t participate, but we did help out the other volunteers.
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Voldemorting
If you didn’t already know (I didn’t), “Voldemorting” is where you don’t use a thing’s name when talking about that thing. (There are slight Harry Potter spoilers ahead, so consider yourself warned.)
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Tour de Force kickoff
Namine had a wonderful time at the kickoff event for Tour de Force, the accessible and inclusive program jointly run by the Milwaukee Ballet and Children’s Hospital of Wisconsin.
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Basketball practice
Namine is getting faster and stronger in her sport wheelchair.