Jadyn

2021 EMBRACING BRAVE Denver Spring Recipient

“Jadyn is the strongest person I have ever met. Throughout the last 5 ½ years she has overcome so many medical obstacles with courage, grace, and a smile on her face. From day one of life, anyone and everyone who comes into contact with Jadyn, refers to her as sweet and I believe her given gift is to put a smile on anyone’s face.

Jadyn was born 5 weeks premature and was thought to be a feeder/grower in the NICU at our local hospital, but after weeks in the NICU my husband and I had to make the tough decision to Flight for Life her to Children’s Hospital in Aurora, Colorado. Upon arrival many things were brought to our attention about Jadyn’s behavior as a newborn and the journey of figuring out the Jadyn puzzle started.

After three months in the NICU, hundreds of tests, including blood work, muscle biopsies for metabolic disorders and genetic disorders, multiple spinal taps and placing a feeding tube in Jadyn’s stomach, we brought her home just before Christmas. A week later, back to the hospital with rhinovirus and after that an endoscopy and acid reflux tests. After that the list goes on and on for the next 5 years. We have lost count of the number of hospitalizations, but have been under anesthesia over 15 times and had G tube placement and removal surgery, a twisted intestine surgery, tonsils and adenoids taken out, an eye muscle loosening surgery, a wrap put in to control her reflux, a hiatal hernia and wrap repair, multiple endoscopies and PH probe procedures. Now she is headed for her next surgery this summer; a hip surgery called the VDRO for both sides.

Through all of this, Jadyn remains undiagnosed and is said to be the first of her kind. Jadyn is considered an undiagnosed genetic disorder. She suffers from hypotonic cerebral palsy, cortical vision impairment, Sandifer’s syndrome (acid reflux to the point the body has seizure like movement to cope with the pain), encephalopathy, global delays, and paroxysmal kinesigenic dystonia (a movement disorder that looks a lot like seizures and impacts her ability to handle daily task).

Despite all of Jadyn’s medical setbacks and challenges she remains so happy. She is such a fighter. We go to speech, occupational, and physical therapy every week and she continues to improve.

She is learning how to communicate with a computer where she makes choices with her eyes and hands. Just this year, she has learned how to drink from a straw cup, eat with a fork with assistance, she has taken her first steps in a walker and said her first word. Her strength is something we could all learn from and her patience waiting for science to catch up to her is amazing.” 2021