Diagnosed with Noonan syndrome at birth, 10-year-old Aubrey Ragland is a frequent visitor to our Complex Care Clinic. Despite needing to be vigilant in order to manage her genetic condition, she doesn’t let anything hold her back.
Playing with her dolls, watching Disney movies and going on vacation are the most pressing priorities for Aubrey, who just finished the fourth grade. But in between doing all her favorite things, she also has to navigate the health challenges associated with the disorder she was born with.
Living with Noonan syndrome
Noonan syndrome is caused by a gene mutation that impacts physical and developmental growth. It can cause distinct facial features, short height and often includes heart defects and bleeding disorders. For Aubrey, the condition affects many different areas of her body but especially her heart, eyes and muscle tone.
“Aubrey sees our specialists in cardiology, genetics, hematology, neurology, neurosurgery and ophthalmology for her complex care coordination,” explained Dr. Tiffany Kimbrough, medical director of our Complex Care Clinic and our Transitional Care Unit. “She needs to see her team of providers frequently, take several medications and follow unique precautions to make sure she stays medically optimized.”
Aubrey has endured a lot in a short period of time with our providers taking care of her every step of the way.
“Throughout her life, she has undergone two open-heart surgeries and brain surgery,” shared mom Lisa Garcia. “Everyone at CHoR has been amazing. The staff is always kind and welcoming, and I always know Aubrey is safe and well-cared for when she is at the hospital.”
Our team really enjoys the time they spend with Aubrey and are inspired by her during every visit.
“Aubrey is a fighter in the face of all that she has been through, and she’s been through a lot,” said Dr.
Kimbrough. “She continues to smile and bring her brightness into all the spaces she enters. She is full of spunk and that’s one of my favorite things about her.”
That fight and that spunk really helped her during a tough school year.
"She was only able to attend 3 months of school this year because of her medical challenges," shared Lisa. "Despite having many absences due to her health, she worked incredibly hard, earned the Most Improved award, and was able to make up for her learning loss."
But mom’s pride doesn’t stop there.
“I am so proud of everything she overcomes and her ability to remain happy and positive through everything she has been through.”