Emily Newcomb

February is Noonan Syndrome Awareness Month. The Newcomb family is passionate about sharing Emily’s story so that they can help bring more awareness to Noonan Syndrome. Additionally, Emily also celebrated 3 years of being seizure-free in January! To learn more about Emily and her journey, please continue reading and watch this emotional and inspiring documentary about their story on the PUDM YouTube channel which you can watch here: Our Families | The Newcomb's

“Emily was born June 9, 2012. By 8 weeks old, she was being transported by ambulance to Riley. That’s when her Riley journey began. She was diagnosed at the time with Hepatic hemangiomas (abnormal blood vessel tumors in the liver). At 6 months old, Emily was diagnosed with Hydrocephalus, and she had her 1st brain surgery. After surgery, Emily began having seizures.

Her medical journey has been a rollercoaster, and every time we went back to Riley, they diagnosed her with something else. Over time, she has been diagnosed with Hepatic Hemangiomas, Hydrocephalus, intractable drug resistant Epilepsy, Hypothyroidism, Noonan-like syndrome with loose hair anagen, Renal Tubular Acidosis, and Pulmonary Stenosis. It hasn’t been easy, but Emily has remained resilient through it all.

Emily currently has 10 doctors at Riley, 2 at Peyton Manning, Ent., and her regular pediatrician here at home. Emily has had 8 brain’s surgeries. During the last surgery on January 6, 2020, they removed the left portion of her brain where the seizures were being triggered. Ever since then, Emily has been seizure-free!

It is hard to sum up a complex medical journey in a few words. There’s not enough paper or time to write about the sleepless nights, the daily struggles, juggling appointments and just trying to live a normal life like none of this is happening.

Keep dancing for our kids!!
Thank you PUDM!
Boiler up!

-The Newcomb Family