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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Tightening braces
Namine’s mouth is a little sore, but otherwise her dentist appointment went fine.
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Last tennis practice
Namine has had a lot of fun and made a lot of friends over these past several weeks.
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Team Up For Fun Camp
For four days, Namine attended an accessible camp designed for children with disabilities. ♿
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Moving in tennis
Namine has shown some serious progress over these last few weeks of tennis.
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Chasing fireflies
When we were children, Jessica and I loved to chase and catch fireflies. Now Namine has gotten to do it too.
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Creepy Crawly Zoo
Creepy Crawlies are disgusting to me. I don’t like them in my house. I don’t like them crawling on me. I don’t like touching them. I don’t like them. 😝🐛
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Moon gazing
We visited an observatory for a chance to see the moon up close.
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Baseball game
Namine had a wonderful time going back to baseball. ♿⚾
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Fishing wish trip
Last month, Namine was invited to go on an all expenses paid fishing trip. She was thrilled to go, and although things didn’t quite turn out as planned, she still had a lot of fun.
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Orthopedic appointment
Namine saw her orthopedic surgeon today. No news is good news, as they say, so today we have good news.
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iSACRA Awareness Day
June 6 is iSACRA Awareness Day, a day for members to show their pride in who they are. ♿
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The Wizard of Oz
For two days, Namine participated in her school’s production of The Wizard of Oz.