Fundraising in honour of Ava
Ava was initially diagnosed with a congenital heart condition that appeared mild at five months gestation. However, as we approached her delivery date, advanced imaging revealed a more complex condition that required specialized care.
It wasn’t until her care was transferred to Dr. Lindsay Freud, Head of Fetal Cardiology at The Hospital for Sick Children (SickKids), that she received an accurate diagnosis: a rare congenital heart defect known as Ebstein’s anomaly—a condition where the tricuspid valve is abnormally formed and displaced from its normal position.
In Ava’s case, the displacement was severe. Fortunately, the incredible team at SickKids quickly implemented a comprehensive care plan. Since birth, Ava has been closely monitored and, to date, has not required surgery. Today, she is a lively three-year-old who loves dancing, singing, and playing dress-up with her older sister. She will soon undergo the cone procedure—a highly specialized repair of the tricuspid valve that is only available at select hospitals.
While the care at SickKids has been extraordinary, Ebstein’s anomaly remains an extremely rare condition with many unknowns. This uncertainty makes the journey terrifying for families like ours. The lack of available research means there are no guaranteed outcomes—only questions, and hope.
To help change that, Dr. Freud and her team are leading the Fetal Ebstein Anomaly and Tricuspid Valve Dysplasia (FEAT) Study, an international research initiative that follows patients diagnosed in utero with Ebstein’s anomaly or tricuspid valve dysplasia. This study aims to track these children throughout their lives to better understand how to care for them and improve long-term outcomes. Learn more about the study here.
To support this critical research, we’ve launched Heart in the Game—a community-driven fundraising initiative inspired by Ava and so many other children living with complex congenital heart conditions. Our goal is to raise awareness and funds for the FEAT Study and other vital cardiac research at SickKids.
Whether you’re an individual looking to give or a business seeking to make a meaningful impact, your support can make a difference. For corporate sponsorships or partnership opportunities, please reach out to us at info@heartinthegame.ca or visit heartinthegame.ca.
To make a donation directly, click "DONATE" and help us put more heart in the game—for Ava, and for all the kids who deserve a fighting chance at www.heartinthegame.ca.
Your Impact
This fundraising page is in honour of Ava and to bring awareness to Ebstein Anomaly.
Donations made through this page will support The Fetal Ebstein Anomaly and Tricuspid Valve Dysplasia (FEAT) Study at SickKids led by Dr. Lindsay Freud.
Our fundraising goal is to raise $250,000 in support of this study.
Thank you for your support to SickKids Foundation!
Thank You to Our Donors
Shannon Griffin
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