Aria Claire Chretien
Our beloved daughter, Aria Claire Chretien, passed away April 11, 2021 after battling a rare form of Heart Disease called Pulmonary Vein Stenosis (PVS). Aria’s determination and strong will to survive was evident following her open heart surgery after being diagnosed in July 2020. From the very beginning, Aria was in a fight with time and there were many uncertainties about her future due to the aggressiveness of her disease. Through the smiles and daily interactions that Aria had with her parents, doctors, nurses and other hospital staff, it was understood that this was a fight Aria was prepared to take on. Through Aria’s journey, many individuals from around the country were able to learn about the seriousness of PVS and the resilience of Aria.
Through Aria’s fight with PVS, we learned that no matter how much you wanted to be in control, Aria was always in control. Aria’s journey was full of happy times and sad times, but most of all it was the most beautiful experience of our lives. We learned that the strength of Aria represented much more than we could fathom. Her daily drive to push through her setbacks with a smile was addicting.
Aria unexpectedly suffered cardiac arrest 3 times following a common surgical procedure to place a broviach and g-tube, which was followed by a lifesaving procedure to place her on ecmo. She suffered multiple major strokes and many seizures. Again, the odds were stacked up against her. Neurology was now concerned she would face vision and movement problems, as well as an inability to communicate with the outside world. And, again, Aria began proving everyone wrong with her steadfast resilience. Aria was now capable of moving all of her extremities, look at and follow objects, recognize when your in the room even if you are silent, track objects and people as they move left and right and more. Aria was showing everyone that even though she had suffered multiple major strokes, which would have caused many impairments, she wasn’t done and sitting back and calling it quits wasn’t an option. Aria has definitely proven herself to be an angel sent from above by touching the hearts and minds of many at both BCH and through those following her unique story on Facebook.
We have chosen to create a trust in Aria’s name with the help of BCH to help provide funding for further research into PVS in hopes of finding a cure one day. Our children are stronger than you may think. Their little bodies are capable of more than most adults. Help us by providing these children the opportunities that most of us are born with. Let’s put an end to childhood PVS!
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