Welcome to Amy Stephens' Fundraising Page!
Thank you for visiting my personal fundraising page! We are so excited to participate in our sixth Congenital Heart Walk, a joint venture between The Children's Heart Foundation (CHF) and The Adult Congenital Heart Association (ACHA) that raises money for congenital heart defect research.
We walk in support of our youngest daughter, Alana, who has Ebstein's Anomaly (EA). EA is an extremely rare heart defect that impacts 1 in every 210,000 births worldwide. With EA, the tricuspid valve that allows blood to flow from the right atrium down into the right ventricle is displaced down into the ventricle, reducing the ventricle's size and efficiency. The valve is also malformed and stays attached to the heart wall in some spots, preventing it from opening and closing properly when the heart beats. Therefore, blood leaks back up into the atrium and can cause the right side of the heart to enlarge which, over time, can lead to heart failure. Like many children with EA, Alana also has a hole between the upper two chambers of her heart. This hole allows unoxygenated blood to shunt over to the left side of her heart, where it is then pumped out to the rest of her body. As a result, Alana tires more easily and can appear "blue" at times. Lastly, Alana has Wolff-Parkinson-White Syndrome, an extra electrical pathway in her heart that can disrupt the normal rhythm of the heart and lead to episodes of rapid heartrate.
Alana has been on medication since birth to support the pumping ability of her heart. She had her first open-heart surgery in October of 2014 to move the tricuspid valve back up to its correct position in the heart and to reduce the size of the hole between her atria. Pre-repair, the right side of her heart was significantly enlarged, her valve leakage was severe, and her blood oxygen averaged between 89-92%. Post-repair, the tricuspid valve is positioned correctly in her heart, her valve leakage is mild, and her blood oxygen is anywhere between 95-99%. Even better, the pumping ability of her right ventricle is closer to "normal" than it's ever been. Alana has been doing wonderfully since her surgery and runs around and plays like any other 5-year old. While she will always require cardiac care and the probability of future procedures and surgeries is likely, we are so thankful for her health and the care she has received.
We also know how fortunate we are to be in this situation. The valve repair Alana had done has only been performed in the United States for 10-15 years. Had she been born 20 or 30 years ago, things could have turned out differently. Medical research has come such a long way that our little girl, who was born with a very abnormal heart, has a chance to live a longer, healthier life than at any other time in history. We pray that every child with CHD has this same opportunity. Continued research is the only way we can achieve that though. Please consider making a donation so that Alana and all the other children and adults living with congenital heart disease have this opportunity. Thank you from the bottom of our hearts for your support!
Please consider making a tax deductible contribution to support my fundraising efforts on behalf of The Children’s Heart Foundation and the Adult Congenital Heart Association. All funds raised benefit CHD research and programs. I appreciate your support!
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