Lily Palan is a kind hearted, generous, playful, sweet six-year-old.  She lights up any room with her charisma and beaming smile.  She’s motherly and always looks out for kids smaller than her and enjoys playing dolls more than anything.  Someday she hopes to be a teacher or at least get to work with children.  The people around her always comment on how big of a heart she has; ironically her big heart needs to be removed. 

Her parents, Evan and Jenny, grew concerned about Lily’s slow growth, chronic cough, and leg pains which prevented her from running around like a normal six-year-old.  They took her to the doctor who ran multiple tests to discover Lily has celiac disease, what was thought to be pneumonia at the time, an enlarged heart, liver, and kidneys.  Lily then underwent an echocardiogram so they could get a better view of her heart.  The cardiologist performing the procedure discovered severe dilation of her upper chambers and stiffness between heart beats, but had no idea why this would show up in a six-year-old.  A panel of cardiologists at the University of Wisconsin theorized that Lily had a rare heart condition (one in a million children) called Restrictive Cardiomyopathy.  They now know she never had pneumonia, but her heart was pushing fluid into her lungs and other organs causing enlargement.

Lily was admitted to the hospital for a week to perform tests.  Her condition is so rare she could be considered a unicorn and every doctor wanted to have a chance to evaluate her.  It was confirmed that Lily has Restrictive Cardiomyopathy, a rare condition where the chambers of the heart become stiff over time. Though the heart is able to squeeze well, it’s not able to relax between beats normally. Eventually, this disease makes the heart unable to pump as much blood out to the body as it normally would and leads to heart failure.  After the evaluation, it was determined Lily’s condition is due to a genetic mutation.  And with no other underlying illnesses causing her condition, there is no medication to treat her Restrictive Cardiomyopathy.  Lily’s only hope is a heart transplant. 

The Palans looked into pediatric heart transplant centers and landed on Children’s Hospital Colorado.  Colorado is where their family started and called home for many years.  But the relocation to Colorado is bittersweet for the Palan family.  They are relocating from Wisconsin and leaving behind a vast network of family and friends so Lily can receive the treatment she urgently needs.  Lily will be added to the donor list upon arrival to Colorado.  She will have ongoing care for the rest of her life to keep the body from rejecting her new heart.  Currently, transplant hearts last about 15 years and most recipient bodies are not strong enough to receive two transplants within their lifetime. This means Lily’s life may be cut shorter than most.  Unfortunately, this little girl who loves playing with her baby dolls and dreams up names for her own children, may never become a mother of her own.  

Lily’s family is working with the Children’s Organ Transplant Association (COTA).  They raise funds for transplant-related expenses for children like Lily.  As a 501(c)3 not-for-profit organization, COTA receives donations to help offset transplant-related expenses.  COTA then disperses funds to families to offset those expenses.  Please consider donating to COTA in honor of Lily.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.