As parents the scariest thing we can imagine is that one of our children gets sick. Unfortunately for many parents this fear becomes a reality at some time in their lives. It is important that we support those parents, either because we ourselves understand the struggle, or because we are lucky enough that we do not. Here is one brave young lady’s story of her battle with a heart defect she will continue to fight, #teamgenevieve.
About Genevieve
This is Genevieve. She is a bright, courageous, and active 11-year-old girl. This strong young woman has a passion for dance, swimming, the Boston Red Sox, and making TikTok videos. She loves to watch #FullHouse and #FullerHouse on #Netflix, and is obsessed with anything having to do with #TaylorSwift and #ArianaGrande. She loves her family and friends, and is filled with life’s possibilities!
When you see Genevieve with her twin brother, Harry, you see two beautiful, bright children. You would never know that Genevieve was sick, but she is. Genevieve was born with a congenital heart defect called Aortic Stenosis. It was diagnosed a few weeks before her birth, so it came as no surprise when only a few moments after she was born, she was whisked away to a children’s hospital. Thankfully, this hospital was Brigham And Women’s Hospital in Boston, and a short bridge connected to the children’s hospital. We wore this bridge out as we fought for our baby girl!
This is when our journey with CHD (congenital heart defect) began.
Genevieve’s Story
On her second day of life, she underwent her first surgical procedure. Just before she turned two, she had her first open heart surgery. In 2016, she had her second open heart surgery. After experiencing dizziness and trouble breathing, she was taken to the emergency room, only to be released when she felt better. At her cardiology examination a week later, our fears were confirmed, her aortic valve had reached a point that another surgery is necessary.
On June 5, Genevieve will undergo her third open heart surgery to attempt to repair her aortic valve, which has not closed properly her entire life. (By not closing properly, her aortic valve has been leaking, which becomes worse over time.)
This journey has been a lifelong struggle for Genevieve, but our girl is strong! She openly shares about her illness and struggles, her worries and fears. PTSD is a common challenge for children who live with chronic health struggles, and it just becomes one more hurdle for them to overcome. Genevieve’s anxieties have increased as her symptoms began to show in the past few years, and she has been treated for her anxiety. However, sharing her journey has become therapeutic for her. As she shares her own experiences, she radiates strength. She is an inspiration to all who know her in life, and online.
Support Team Genevieve!
This is why we need YOUR HELP! On June 4, we ask all of you to Tweet #TeamGenevieve to show support! If you want to take it up a notch, feel free to take a photo of yourself holding a sign that says #TeamGenevieve, post to your social media account, and use our hashtag! Let’s show this little girl how mighty her tribe is – and how powerful she has been – and will continue to be – in our world.
You’ve got this Genevieve, and we’ve got you!
#TeamGenevieve #June4 #CHDAwareness
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