Emily is an eleven-year-old girl residing in Manchester, New Hampshire with her mom, Amanda and her dad, Brian. Emily loves to ride in the car with the windows down so she can feel the wind on her face, and loves to spend her time listening to music. She is a happy and sweet girl who continues to defy the odds.
We invite you to read more about her story and support Emily through a purchase from our shop where every purchase will go towards widening the doorways in Emily’s house making it more accessible. You can also subscribe to our podcast and hear our interview with Emily’s parents releasing May 17th.
“She’s going to write her own story and do what she’s going to do. As long as she’s happy while she’s doing it we are along for the ride.”
Amanda had a very uneventful pregnancy; her usual ultrasounds came back normal and there were not any suspected issues with the baby. Shortly after Emily was born, not only was her head circumference larger than most, but she failed her hearing test. After inconclusive tests, Brian, Amanda, and Emily were sent home where Emily continued to behave like any typical newborn – she was eating, sleeping well, and having normal bowel movements. Amanda and Brian were sent to the Neurology department at Boston Children’s Hospital shortly after going home for their follow up appointment.
At an appointment with the Neurology team at Boston Children’s hospital, the doctor informed Amanda and Brian that the majority of Emily’s brain was missing. She was diagnosed with hydrocephalus and needed a shunt to drain the fluid that was filling her head. A room full of doctors explained to the family the things Emily would never accomplish – if she even survived. They said she would never smile or laugh, never see her first birthday, and never move or breathe on her own. In addition, Emily would be deaf and blind.
After the appointment, Emily continued to persevere and knock down the limits placed on her. She is non-verbal, but communicates with her parents through cooing and smiling. Emily’s hearing was fully improved once the shunt was placed and the fluid was no longer causing pressure, but remained cortically blind, which means the connection between her eyes and her brain is almost non-existent.
Fast forward to today, and Emily is close to celebrating her 12th birthday, breathes on her own, and is able to make small movements. She is a fighter, she’s happy, and every day she continues to prove she is much more than her medical labels.
Time to get loud shouters!
Throughout the month of May we will be shouting love for Emily and four other kiddos with their own special and unique stories. We hope you will join us in getting to know these five incredible families.