Support Lilly's Open Heart Surgery

Dear friends and family,

Our sweet friend, Lilly Greenwald, is gearing up for a necessary and life changing open heart surgery in 6 short weeks. Lilly and her parents, David and Stephanie, and strong sister, Phoebe, will be traveling to Boston Children's Hospital for nearly a month to undergo a challenge they couldn’t have imagined a year ago. Stephanie, putting her own fears aside, dove in head first to find the best solution for Lilly, and while she found the best team of doctors to help Lilly, even with insurance, it’s going to come at a cost. Helping to reduce the financial burden would allow her to focus solely on Lilly’s recovery. If you don’t know Stephanie and the Greenwald Family, you have likely crossed paths with them at some point volunteering at school, raising money for the Salvation Army, collecting items for various donation campaigns, restocking her Little Free Library, or leading the Girl Scout Troops. I would love to give back to our sweet friends, who continuously give to our community.

How your donation will be used: The money we raise will go toward the out-of-state medical bills, living in Boston for close to a month, and loss of a full month of income to care for Lilly after the surgery. While Lilly’s mom, Stephanie, has been working as much as possible to cover these costs, I hope to alleviate part of the financial burden involved with financial loss, medical debt, and caring for a medically fragile child.

About Lilly’s condition: This past year it was discovered that Lillian has a rare congenital birth defect called a Double Aortic Arch (DAA) which has formed an anomaly called a Vascular Ring (VR). Essentially, she has a ring around her esophagus and trachea causing compression and slowly choking her to death. A VR is like a rope around a tree. The ring stays the same size while the child grows, causing the compression to increase. If left untreated the VR can lead to permanent damage, including losing the ability to swallow.

Lilly has had undiagnosed symptoms associated with this birth defect her whole life including frequent respiratory infections that lasted much longer than those of her peers, pneumonia, wheezing, coughing, trouble swallowing, acid reflux, snoring, dysphagia. We are thankful she was born with the DAA as the left aorta alone would not have been able to function and she would have had very serious issues much earlier in life.

About the surgery: Lillian has a circumflex aorta meaning her right aorta passes behind the esophagus causing compression from the behind and from the side. She will have an Aortic uncrossing procedure via open heart surgery. This operation reroutes the aorta. They will basically crack open her sternum, put her on cardio-pulmonary bypass, cut the aorta out and reattach it in the front where it should have been or where the left was. They'll also remove the VR and left aorta.

The Benderson Family Heart Center at Boston Children’s Hospital is the leading hospital in the world for vascular ring repair. Patients go to them from around the globe. They have a multidisciplinary team and look at each case from every angle. Their cardiologists, pulmonologists, gastroenterologists, otorhinolaryngologists, and orthopedic surgeons collaborate on every patient’s care.

Lilly is somewhat nervous about surgery; but she is looking forward to being a part of the exclusive “zipper club” and experiencing what normal swallowing feels like.

When she was first diagnosed she said “I’m not ordinary, I’m extraordinary” And that she is. She is a fantastic and fearless 11 year old. She loves Taylor Swift, and is deeply passionate about her friends and playing volleyball. Please keep her in your thoughts and prayers as she goes through this life changing journey.