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Ambassador Highlight: Meet Arden

Published: January 26th, 2017

Category: CMN Ambassador Stories, For the Kids, Patient Stories

Arden Thornbury is a miracle in all definitions of the word.

She was born prematurely at 32 weeks, becoming extremely ill at just 6 weeks old. Doctors in the UF Health Shands Children’s Hospital Neonatal Intensive Care Unit discovered that her heart had grown to take up 75 percent of her chest cavity and was crushing her lungs. They placed Arden on a ventilator and transferred her to the pediatric intensive care unit.

Following many tests, Arden’s doctors determined her only chance of survival would be a heart transplant. After doctors diagnosed her with hypertrophic cardiomyopathy, Arden received a lifesaving heart transplant at 3 months of age.

Doctors also ordered extensive genetic testing, as the cause of Arden’s sudden and severe heart problems was unknown.

Just before her second birthday, the results came back. Arden was diagnosed with a rare and progressive mitochondrial disease known as Leigh’s syndrome.

Due to Arden’s many health obstacles, she requires complex medical care and constant monitoring from several specialists at UF Health Shands Children’s Hospital and the Outpatient Specialties Clinic. Whether Arden is an inpatient or having routine checkups, both facilities provide Arden with the care she needs to continue to defy the odds and continue to share her contagious smile and infectious spirit. She turns 5 this summer.

Arden’s mom, Heather, describes the day she brought her daughter home from the hospital as a gift, and a second chance.

“She was able to feel what it was like to fall asleep in the arms of her parents,” Heather said.

Home and surrounded by family and friends, Arden and her family live by the motto: “You are unrepeatable. There is a magic about you that is all your own.”

Throughout their journey, Arden’s family has relied on the support of family, their community and the many UF Health staff that became close friends. Her mother recognizes the physicians, nurses and staff who were instrumental in Arden’s journey, as well as the less visible support, and is grateful each day for the care her daughter received.

“The level of care available at UF Health Shands Children’s Hospital has meant the world to our family,” she said. In addition to the care, Arden’s family expressed gratitude for the support Children’s Miracle Network Hospitals provided.

“CMN supplies much more than equipment — they help provide an environment that lets children receive the best care possible and also keeps families supplied with what they need as well during tough times,” Heather said.

“Whether it is toiletries or matching families together that have been through similar journeys to share their support, it is made possible because of CMN and the people behind the organization who truly care and are passionate about what they do.”

 

 

 

 

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