“We had no idea of the wonderful organizations that were out there who help families in situations like ours.”
“Lilli has had a rough first two years of her life.” Before Lilli was even born, her parents had found out via an ultrasound that their baby had Down syndrome and had a hole in her heart.
“We spent 19 days in the hospital after birth,” said Lilli’s mom. Lilli was having complications with feeding, weight and jaundice. This 19 day stay quickly turned into a four month stay in May of 2016 when they were admitted to University of Minnesota Children’s Masonic Hospital in Minneapolis, due to Lilli needing specialized care, which led to even more complications. On August 11, 2016 Lilli finally received her heart surgery, which had been successful until Lilli ended up with a collapsed lung and pneumonia. In September, the family was finally able to go home after a “short” three week ICU stay. “We were celebrating her life,” until the doctors were concerned about her low immune system.
In February of 2018 Lilli was diagnosed with AML Leukemia. At this time her father was working in South Dakota, so when he heard the news he rushed home from work to be by his family’s side. “We were scared, devastated, confused. We were in denial.”
During this time, Lilli’s family learned to lean on family and friends, and learned that it’s ok to breakdown. Lilli is currently in remission, but in the “maintenance phase” and is given chemo once a week at home. Lilli even has a theme song, “Hey, I’m not giving up today,” which gives “a perfect description of who she is,” continues Lilli’s mom.
“We are so grateful for the support of Pinky Swear,” says Lilli’s mom. “We had no idea of the wonderful organizations that were out there who help families in situations like ours.”