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Nicole- Single Gene Mutation

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While pregnant, Nicole receive a pretty grim diagnosis for her unborn son, Jacob. Doctors found a cyst on his brain, and other abnormal development. Nicole did not think she would be able to carry Jacob to term, but through a second and third opinion, they were given more positive news and gained more hope. Jacob spent the majority of his first year in the hospital, and was diagnosed with Tracheomalacia, an abnormal brain stem, and a single gene mutation- that no one else in the world has been diagnosed with.

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Kierra: 22q11 Deletion syndrome, Tracheomalacia, Pulmonary Atresia

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While pregnant, Kierra went in for a routine ultrasound and was told her daughter, Evanna had a major heart defect. Doctors found several other indicators that pointed to Evanna having 22q11  Deletion- also known as DiGeorge syndrome.

After Evanna was born, Kierra and her husband received an official diagnosis of 22q11 Deletion syndrome.

When Evanna was 5 months old she had her first open heart surgery; and subsequently spent 400 days in the hospital due to complications.

Evanna has a major heart condition know as Pulmonary Atresia– MAPCA’s (Major aortopulmonary collateral arteries) which is often a complication found with 22q11 Deletion syndrome. She also has a critical airway, known condition known as Tracheomalacia.

Visit Kierra’s blog at

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