Lucy M.

Condition: DDX3X
City, State: Bend, OR
Club: Miller Elementary School Sparrow Club Service Hours: 256
Date Adopted: 1/16/2019

Lucy's Story:
Lucy was born on September 17, 2014. She came home from the hospital as a healthy child. She failed to pass her hearing test, but that’s common with newborns. During the first few weeks there were some bumps in the road, but again very common with newborns and nothing serious. Lucy was welcomed into the house by her 2 older siblings, Brooklyn (6) and Austin (5).

At eight weeks old her parents noticed something didn’t seem right. The pediatrician noticed that Lucy wasn’t tracking with her eyes and sent them to an ophthalmologist. The good news was that her eyes were healthy and normal. The bad news was that they were sent to neurology to find answers.

Neurology was just the start of their journey at Seattle Children’s Hospital. Every appointment led to another appointment. They had teams of specialists from every clinic assessing Lucy to find the root of the cause. Her MRI showed that her brain was not structurally normal. Lucy’s parents spent three years hearing that her brain was malformed and had other specialists arguing that it was more of a maturation issue, meaning that her brain might continue to grow on its own timeline.

Those were hard years. There were lots of tears and hoping that she would grow out of her developmental delays and catch up. Her parents had to adjust their expectations for Lucy’s life.

Shortly after Lucy’s 3rd birthday her family finally had a diagnosis. They received the results from her genetic blood test. She was diagnosed with DDX3X, which is a genetic mutation that spontaneously happened at conception. It’s an error of one tiny little gene that completely changed the outcome of her life. DDX3X primarily affects girls and was only recently discovered in 2014.

Lucy brings so much joy to her family. She has an infectious smile, the loudest laugh, sparkly blue eyes, crazy curly hair and she’s just fun all the time! She loves music, water and animals. She works hard every week with her therapists. Her parents weren’t sure if she would ever walk, but she’s so close. She’s so determined and never gives up!

Sparrow Cash raised for Lucy will help with ongoing medical expenses, special equipment and everyday living expenses. Students at Miller Elementary School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.


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