mma was born three-and-a-half weeks early on Mother’s Day 2017. Over the course of the next year Emma did not meet any of the expected milestones, and after countless dead-ends, at 14 months she was diagnosed with an extremely rare genetic disorder called “9p Minus Deletion Syndrome (9p-).” Symptoms range from life threatening cardiovascular and neurological conditions to hypotonia and developmental delay.
To date, everyone had approached Emma with the intent to discover what was “wrong” with her, and to “fix” her. Inherently, this approach left us feeling that she was inferior and needed to change. But an unprecedented period of growth, hope, and happiness began the day we started at Boyer and met Susan O’Leary and MaryEllen Buchanan.
They looked at Emma and saw her as the wonderful, warm, funny, tenacious, and loving girl that she is, full of potential, wonder, dreams, life, and love. For the first time, she was not treated as a “problem” that required solving, but rather as a perfectly placed and integral piece of the puzzle.
In the matter of one year, the talented and compassionate staff at Boyer gave Emma the tools she needed to learn how to sit, stand, walk, run, climb, talk, sing, eat, and advocate for herself, to a degree we were unsure she would ever reach. They stood by our side at the helm, compass in hand, guiding us through the labyrinth of programs, services, forms, insurance, evaluations, and placements.
Above all, they welcomed us into their community with open arms, loving Emma for who she is and all the gifts that she brings to the world.”
–Ericka (Emma’s mom)