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Addison was born on May 4th, 2007. She was a full term “C’ section baby. At first glance like most births she appeared very ‘normal’. She did however, make some strange squeaking like noises. Four days in the hospital produced no answers, so we took her home. 10 days after the birth she had a checkup with her pediatrician. Because there had been no real change in her condition he decided to send her to an ENT for a more thorough evaluation. We went that afternoon in a bit of a rush. The next morning she was trached. Addison’s airway had been 80% occluded the whole entire 10 days of her existence. They told us they wanted to do a ‘F.I.S.H.’ test. If the shock of the trach wasn’t enough, they were about to introduce us to a syndrome that would change our entire families life forever. It was called 22q11 deletion (i.e. VCFS, DiGeorge syndrome). For the next 7 mos she would have all of the tests, (heart, kidneys, immune, calcium, palette etc). Addison would end up pretty lucky in regards to most of the tests. She had a small VSD which has since closed on its own. However, the one thing she wasn’t so lucky with was what is known as a laryngeal web. This is what was obstructing her airway and is a very rare form of this disorder. After a major reconstructive 9 hour surgery at 8 mos. multiple laser procedures to remove scar tissue, balloon dilations to stretch her airway, she was finally trach free. With surgeries to maintain she got by until she was 2 yrs. old. The first graft had failed and it was time for another reconstruction. All of the surgeries have left her without functioning vocal cords, so consequently she cannot speak. She uses sign language very well as her primary form of communication. Addison also suffers from frequent bouts of pneumonia due to aspiration. That brings us to date so far and the last few months she has been making wonderful strides in all facets of life. She is currently enrolled her in preschool starting next fall. We are optimistic and hopeful for Addison and want to send our thoughts and prayers to all who are affected by this life altering disease. Sincerely, The Cannizzaro’s

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