Condition: Hypoplastic Left Heart Syndrome
City, State: Portland, OR
Club: Parkrose Middle School Sparrow Club Service Hours:
Date Adopted: 10/21/2013
Adorable Lilliann, or Lilli for short, will turn five years old on October 30th, 2013. However, if Lilli would have been born about 20 years earlier, she may have never lived to see this milestone. This is because Lilli has a congenital heart defect known as HLHS (hypoplastic left heart syndrome), a defect that before 1982, was 100% fatal.
Within just a few days of being born, doctors realized that something was terribly wrong with Lilli’s heart. The left side of her heart, which is responsible for pumping blood to the body) was not working. Because of this, Lilli had to have her first open-heart surgery when she was just nine days old. She had her second open-heart surgery when she was four and a half months, and in May of 2013, she had her third. Lilli’s heart will never be “fixed” and her family, along with her doctors, expect there to be further interventions in the future. Lilli has a heart checkup every six months and is on daily medication to regulate her blood pressure.
Unrelated to her heart condition, Lilli also has some paralysis in some of her facial nerves: a condition known as “Moebius Syndrome.” This causes her mouth to curve downward when she smiles and prevents her from being able to move her eyes laterally or blink involuntarily.
In spite of these hardships and challenges, Lilli is full of life! Lilli is very happy and enthusiastic and loves being the center of attention. She loves all things “princesses” and loves to sing as well.
Lilli will be adopted as a Sparrow to Parkrose Middle School in Portland. Students will work hard to raise money for Lilli through sponsored community service and fundraising projects.