Condition: AV Canal Heart Defect, Down Syndrome
City, State: Bend, OR
Club: Bear Creek Elementary School Sparrow Club Service Hours: 344
Date Adopted: 1/20/2017
Gemini was born October 16, 2006 completely blue due to underdeveloped lungs and was immediately put on oxygen. Within just hours of her birth she was medevacked to a more capable facility. Gemini’s initial diagnosis of Down Syndrome and heart defect was delivered to her mother via phone from an unfamiliar doctor. The following day the Doctor came directly to her mother to give her the final news that Gemini was born with a Complete AV canal defect in her heart and that she was expected to live 7 days. Yet true to her spirit, she fought for life right alongside her mother and they went home on the 11th day.
Gemini was scheduled for open heart surgery within the 2nd month of her life, but she wasn’t strong enough for surgery until April 2007. Her surgery was initially scheduled for 8 hours, yet once they began it was realized that she didn’t have a septum and her valves were the size of skin tags. She underwent full open heart reconstructive surgery lasting 15 hours. It is unclear how Gemini survived 6 months with her heart not functioning correctly, as the doctors said after surgery “it is truly a medical miracle.” She still has a very small leak in the mitral valve of her heart, which could put pressure on the aorta if the hole in the valve were to ever grow, then she would need another heart surgery.
Gemini struggled with weight gain for 80% of her life, at 6 months of age she weighed 9 lbs. Post-surgery, she did make small gains but would plateau for several years. She was 28 lbs from the age of 3 through 6. It wasn’t until spring of 2014 that she really began growing and gaining weight. Subsequently 2013 was the year that Gemini was given the news that her heart appeared to be a permanent fix!
Down syndrome affects many aspects of Gemini’s life: cognitive development, behaviors, safety, muscle tone - just to name a few. While Down syndrome affects her health, it is compounded by her congenital heart defect. A cold in Gemini’s system can knock her out, as everything quadruples in her body. Her system simply can’t fight bugs like most people, so when she gets sick,it is like a super-bug because her body is immune suppressed. She is on a daily vitamin regimen and specific diet to help keep her as healthy as possible.
Despite challenges, Gemini is a fun-loving, happy girl with an infectious laugh. Gemini is an outdoor enthusiast delving into all activities like camping, horseback riding, swimming, and gardening. She adores yoga, basketball, P.E. and any sport with movement. Gemini is an animal lover and enjoys learning about new animals when traveling on her “big trips” with her mom. Of course, her favorite holiday is Christmas.
Gemini is incredibly creative and loves to build her own toys. Her ingenious engineering brain sees things that no one else does. These toys built with various items as chopsticks, Legos, Barbie parts, hair ties, and pieces from other toys all come together into one. The toys were given the name “flippy toys” because that is what they do, spin and flip around. It brings her immense joy and satisfaction to build these toys!
Sparrow Cash raised for Gemini will help with ongoing medical expenses, a special vitamin regimen, and everyday living expenses. Students at Bear Creek Elementary will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.