Read Lily’s Story

Lily Evans: Sugar & Spice

Not many people can say they have faced the challenges that Lily Evans has had to endure over the past eight years.  Lily is a sweet, compassionate, and remarkable young lady who has developed much strength and spirit while learning some hard lessons in this life.  As a result of her ongoing journey with heart disease, Lily has touched the hearts and lives of many people.

Lillian Evans was born on February 15, 2002, in Grand Rapids, Michigan.  She weighed six pounds, six ounces and was known as “Princess Lily” in the nursery.  She was a beautiful baby with healthy color and a hearty cry.  With the exception of frequent ear infections, she was a good and healthy baby overall.  She learned to crawl at six months and was always smiling.  Her mom, Sue remembers her as a “chubby little girl with petite features.”  Lily was seen only by the family physician until she was fifteen months old, at which point she was seen by a specialist and diagnosed with Tetralogy of Fallot and Pulmonary Atresia, two complex congenital heart defects.

Lily went to the University of Michigan for her first two open-heart surgeries at eighteen and twenty-four months of age.  The latter surgery left her with one-third of her right lung function, and Lily was placed on ECMO for fourteen days.  She was given only a two percent chance of survival at the time. Due to a serious concurrent infection in her chest cavity, she was not a candidate for transplantation at that time.  

Lily and her family continued to struggle daily with her heart condition for two long years before they finally had a breakthrough.  They consulted a cardiologist in California who proposed a heart/double lung transplant as her best hope for a better life.  After additional consultations with cardiothoracic teams at Lucille Packard Children’s Hospital in Palo Alto, California and St. Louis Children’s Hospital, the Evan’s family turned to the team at Children’s Hospital of Pittsburgh for Lily’s transplant operation and post-transplant care.  The family traveled regularly from Grand Rapids to Pittsburgh for eleven months so Lily could receive immunosuppressive therapy to reduce the chance of her body rejecting the new organs.  During that time, she remained very ill, requiring supplemental oxygen and sleeping 20 hours a day.

Lily was placed on the transplant list in December 2006 and got “the call” on November 17, 2007.  She was flown to the hospital from her home in Michigan and underwent the ten hour transplant operation.  The first post-operative week went well for her; but then she started having some major problems with rejection and lung diaphragm issues.  She ended up staying in the ICU for over 100 days with a much less desirable outcome than anyone had anticipated.  

Lily has fought for the last two and a half years to overcome all sorts of crazy post-transplant occurrences and complications.  Because of the medical challenges she was facing after her transplant, Lily’s family decided they needed to move closer to Pittsburgh.  They did so in June 2009, leaving behind their extended family and friends in Michigan.  Lily was doing reasonably well.  Lily’s two brothers, Luke and Logan, were being well cared for by their aunt, and Lily’s father, Matt, was able to receive a job transfer allowing him to continue providing for the family and paying the bills.  Lily’s mom decided not to work outside the home and made Lily’s care her first priority.  Lily was able to start kindergarten in the fall of 2009 for the third year.

Day to day living with a life threatening heart disease has taken a toll on the Evan’s family.  Over the course of the last six years of fighting for Lily’s life, the family has long since exhausted all of their savings and are frequently overwhelmed by day-to-day expenses.  The Erika Kate Foundation has been able to enter into Lily’s journey and help cover some of their current expenses.  Through EKF, the students and staff at Mulberry Elementary School in Muscatine, Iowa were able to raise more than enough money to pay for one month’s rent for Lily’s family.  Bradford Woods Elementary School, in Wexford, Pennsylvania, has given their support by holding a “Cookie Walk”.  Staff working at the school brought in cookies to sell while families toured the school, looking at students’ artwork. 

Sue, Lily’s mom, shared, “I wish heart disease hadn’t taken so much from us, but I would never give up on my daughter… We are overwhelmed by the generous nature of the people that surround our family with prayers and love.”

Lily’s journey continues, and the family is currently enjoying some good days together in their home outside of Pittsburgh.  In early June, the Evans family will be heading to the east coast for a beach vacation, complements of an organization called “Believe In Tomorrow”.  “Believe In Tomorrow” provides hospital and respite housing services to critically ill children and their families. We wish Lily and her family well as they spend this special time together, playing in the sand and soaking up the sunshine.  May God bless you with beautiful moments together.