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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Sport wheelchair done
Namine finally has her custom-built sport wheelchair!
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Fashion show
Namine was quite excited to be in a fashion show for the first time.
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Just some basketball fun
We were late for basketball, but when we arrived, no one but the coach was there.
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This Is How We Roll Fashion Show
Namine is going to be in a fashion show on April 29th to raise awareness of paralysis and other neurological disorders.
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Sport wheelchair update
Namine got to try out her new wheelchair. It’s not done yet, but it’s close.
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Basketball and other non-basketball games
I love watching Namine play.
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Basketball and dance
Namine had a great time at basketball practice and ballet class.
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Death is not escape
I’ve noticed a trend in responses after a celebrity passes away, and I don’t like it.
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Heart monitor results
We have the results from Namine’s heart monitor, and they’re mostly good.
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Basketball again
Namine had a great time at her first practice since she broke her wrist.
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Hoopalooza
Namine was finally able to participate in a tournament!
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Bone density scan
Namine had an appointment this morning to have a bone density scan. We don’t know any more now than we did prior.