Childrens cardiomyopathy foundation
BCM: How did your life change when you became a mom?
LY: Motherhood has enriched my life beyond words and made me a better person. After losing my first two children to cardiomyopathy, I thought I would never realize my dream of having a family. I now have four healthy children, and I am so grateful for them. They add an invaluable depth and fullness to my life. My children have each taught me to be more patient, tolerant and thoughtful.
BCM: What has/have been your most memorable moment(s) as a mom?
LY: Being a mom opens your eyes to life’s beautiful intricate details. There are so many memorable moments! Looking back, I remember my kids’ fascination and excitement at discovering something new. Then seeing their interest evolve into a passion that they are committed to makes me especially proud as a parent. It has been wonderful learning alongside them and encouraging them in their pursuits.
BCM: What has been the biggest challenge for you in motherhood? Any advice for new moms?
LY: Being a working mom is a roller coaster adventure, and time management is my biggest challenge. I spend most of my day advocating for families of children with a chronic disease, and due to the nature of the job it can be hard to stop working because there is always more to be done. But I have to remember to give enough time to each of my four children and husband, while finding the time to take care of myself too!
What I have learned over the years is that as a mother, you are your child’s strongest advocate. My advice for new moms is don’t be afraid to ask questions and to push for a second opinion or get more input if you sense something is not right for your child – whether it’s a health related issue or a school situation. You know your child best and should always listen to your intuition.
BCM: Your journey in finding the Children’s Cardiomyopathy Foundation has been a long one. Please share the story of how you started an organization that has raised more than $8 million for pediatric cardiomyopathy research and education initiatives.
LY: My journey started when my husband Eddie and I lost our first child, Bryan, to sudden cardiac arrest. He was diagnosed with cardiomyopathy after his death at 11 months old. Even though the doctors told us it would be unlikely to occur again, our second son Kevin was diagnosed with cardiomyopathy when he was born a year later. In an effort to save him from the same fate as his brother, we made the difficult decision to move back to the U.S. from Hong Kong where we were both working as expats. Sadly, we lost Kevin at 9 months while he waited for a heart transplant. We were devastated and needed to make sense out of our immense tragedy.
In our quest for answers, we established the Children’s Cardiomyopathy Foundation (CCF) in 2002 to call attention to a poorly understood disease and to take action on the lack of medical progress and low public awareness. Through the support of our board, medical advisors, cardiomyopathy families and donors, we have achieved some significant milestones for a heart disease that was not on anyone’s radar screen 12 years ago. We continue to move forward with our mission to stimulate research, improve education, support families, and increase awareness and advocacy. This month we are launching the first Children’s Cardiomyopathy Awareness Month with 13 partners, including the American Heart Association, American College of Cardiology and American Academy of Pediatrics.
BCM: You and your husband adopted two children and had two biologicalchildren. Please share your average day with us and what makes it special.
LY: As soon as the alarm goes off early Saturday morning, it’s like the race has started! First it’s pilates classes for me and then the day flies by with the kids’ ballet classes, golf lessons, music lessons and tennis. There are also errands to run, birthday parties to attend, and laundry, shopping and cooking in between. Sometimes we squeeze in time to see a movie, a show in NYC or a NJ ballgame. Then before bedtime, everyone reads. It’s a hectic schedule but Eddie and I have gotten used to the craziness and chaos. At the end of the day, we try to take a breather and remember those special family moments — a game played, a joke told or a song sung during the day.
BCM: How do you manage your work/life balance?
LY: It definitely takes effort to juggle job, family and charity/volunteer work. Family is the priority though. Work will always be there but you can’t replace the time spent with your family. How do I cope with multiple demands? I am a planner and organizer so I make my “to do” list, categorize items by urgency, and then schedule family activities and personal time just like I would my work projects to make sure I maintain a healthy balance of work and play. It’s tough, but I try my best!
BCM: What are your favorite family activities? Any fun family “must do” activities you can recommend to other moms?
LY: In the summer time, it’s nice to invite friends over for a BBQ and swimming. It’s so nice to take a break and reconnect with others. During the winter, we hit the museums or see Broadway shows in New York City. One activity that I want to try more on a regular basis is a family board game night with no TV, phones, computers or videogames in sight. I also want to teach my two older kids to cook a simple 3-course meal so that they can eventually prepare dinner for me!
I’M TOTALLY OBSESSED WITH… Improving the quality of life for children with cardiomyopathy and their families.
MY BIGGEST INFLUENCE IS…Audrey Hepburn who was known for her timeless style but left a deeper impression with her grace, charm and compassion for others.
MY FAVORITE DRUGSTORE BUY IS… Burts Bees Lip Shimmer in Fig – my on-the-go favorite for a hint of color.
MY GUILTY PLEASURE IS… My weekly manicure and whenever I have time to curl up to a good book.
MY FAVORITE NYC ACTIVITY IS … Going to the museum to nourish the mind and soul. Not only is it a great way to spend time with the family, but everyone learns something new and is inspired by what they see.
MY FAVORITE TENAFLY ACTIVITY IS… Going to Roosevelt Park and spending some down time with the kids. Favorite color? Green – the color of life
MY FAVORITE NYC RESTAURANTS ARE…Danny Meyer’s Gramercy Tavern and The Modern. The flavor, texture and presentation of their dishes make it a culinary experience to remember.
MY FAVORITE TENAFLY RESTAURANT IS… Axia, which serves delicious and healthy Greek food in a casual, elegant setting.