Miles for Mae
I recently had a conversation about philanthropy and was asked “Why Boston Children’s”. The easy answer is because Boston Children’s Hospital saved Mae’s life - twice. If not for Dr. Tworetsky, Dr. Emani, the incredible Cardiac ICU and OR nurses and staff, Mae would not be here. It’s that simple. They detected a heart issue when no one else did. They monitored her in a way no one else did. They operated and navigated unexpected circumstances while in surgery, and post surgery with incredible care and precision. Because of that, we celebrated Mae’s third birthday this past April. Had her heart condition gone untreated, undetected, had we not had the outcome we did, she likely would not have even made it to her third birthday. That’s why Children’s. That’s how it all started. Ours is just one of countless stories where BCH saved a child and thereby saved a family. They gave us our baby’s life and Andrew and I feel compelled to give back. It’s the least we can do.
Over the past three years, it has turned into so much more than just a place we go for medical care. It has become a place of great hope, great community and great support for us and so many like us. I remember our first few visits at the Down syndrome Clinic. I stood in the elevator banks on the 10th floor of Fegan in tears. I didn’t know if I could do this. I didn’t know if my heart could hold everything that is required to parent a child with special needs. I didn’t know if I had enough to give to Mae, her siblings and Andrew. I didn’t know if I could handle the medical aspect, the advocacy it would take to get her what she needed, the thick skin to weather it all. It just seemed like so much.
Angela Lombardo is the Patient Coordinator for the DS Clinic. She runs the operations and cares for each family that walks through the door. The scope of her reach is amazing. Her son is 21 years old and happens to have Down syndrome. Our first conversation was the day after we received Mae’s diagnosis and she has become a friend, a mentor, an inspiration to me as a mother. She always puts me at ease. She talks to me like a regular Mom. She shares parenting stories and makes it all seem so effortless. In our initial conversation, I wondered out loud if I had what it took to take on this special needs journey. She very confidently said to me “You can do this Mom. You were meant to do this.” On my challenging days I hear her voice. I feel her confidence in me. And I believe her.
Dr. Davidson, Mae’s primary doctor at the DS Clinic, gave us advice in our first appointment that has become our mantra “raise the bar, expect a lot, believe in her ability”. That’s just what we’ve done. It is a great luxury to be able to create an environment around Mae, filled with resources that allow her to reach her full potential. Andrew and I are on a mission to extend that luxury to all families who walk into the Down syndrome Clinic.
Over the past three years something magical has happened. One small child, with an unexpected beginning and an army of incredible people behind her, is making a huge impact in the lives of so many of her buddies with Down syndrome. Through the generosity of this community we have been able to create “Mae’s Market” at the Down syndrome Clinic at BCH. It is a “store” where families will get anything from books on various topics, to special utensils, sippy cups, therapy supplies, learning programs for their children and so much more. And it is fully funded by The Tapley Family Fund! The first items have been ordered and are getting ready to be distributed to families - tools to help our kids master various skills, handed out during Clinic, free of charge. Because of you, we are able to get the resources Mae enjoys to more families. This is just one of the many ways you’re helping us support the DS Clinic. Thank you!
In honor of Mae turning three, of our family being on the healthy, thriving side of heart surgery, and of our child with a developmental disability soaring in an inclusive preschool environment, we are going BIG this year!! Our fundraising goal is $100,000!!! It’s never been done in the history of the BCH Walk and the number of lives we will touch through the DS and Cardiology Clinics is incredible. Every penny goes to The Tapley Family Fund and is overseen by Andrew and me. This is about giving every child, regardless of resources or background, who walks into the DS and Cardiology Clinics, the best opportunity to be healthy and whole so they can reach his or her full potential.
Thank you for continuing to join us on this journey. Let’s do this!!!!!
xox, Susie, Andrew, Drew, Mae & Ellie