‘I never gave up no matter what’

“Leila, Leila, Leila, I love Leila,” Leilani’s 2-year-old sister, Ellyona Lahey sang while glancing at a baby photo of her older sister May 26.

Many people who met Leilani Lahey know her favorite color was purple, she loved everything geeky from Star Wars to My Little Pony to Wonder Woman, and she was a sassy, spunky 11-year-old girl. But one aspect of hers that stands out above the rest, is that when life gave her lemons, she always made lemonade.

When she was 5-months-old, Leilani was diagnosed with a rare heart condition known as dilated cardiomyopathy. In this condition, the heart becomes enlarged, thinning the heart walls. This affects the heart’s ability to pump blood.

Due to this condition, Leilani underwent a heart transplant and spent nine months recovering in a hospital at Iowa City. When she returned home, she did what normal little girls do — took dance classes, played tee-ball, sang songs and made friends. Leilani soon found herself back in Iowa City in 2014, after the family learned her body was starting to reject the second heart. She was given a Berlin heart, and in 2015, underwent a second heart transplant surgery.

“During this time, her kidney failed,” her mother, Carissa Lahey said. “We sat down as a big group with her whole care team and pretty much realized that she may never get to the point of getting a kidney transplant... March (2016), we made the decision to come home and focus on her quality of life.”

After a year of traveling back and forth from Ankeny and Iowa City for treatments, the family finally returned home this past March and came up with the idea of creating a bucket list for the 11-year-old.

“We all laughed because the first 10 or 11 things on her bucket list were all food items. Leila likes her food and she likes her shows,” Carissa said.

The bucket list was full of items like going to Disney World, watching Guardians of the Galaxy Vol. 2, meeting her celebrity crush Peyton Meyer of Girl Meets World again and enjoying a tall glass of Anderson Erickson Dairy eggnog.

Before she passed away the morning of May 29, the 11-year-old was able to complete a majority of the items on the list with help from her parents, four siblings, friends and organizations like Make-A-Wish Foundation.

There was one item she was not able to accomplish that stuck out to several people around the community – hold a lemonade stand.

On June 1, people who were touched by Leilani’s story rallied together and set up more than 40 lemonade stands in tribute to the high-spirited pre-teen. From Garden Square Park in Prairie City, to a home in Missouri, stands were erected to share the 11-year-old’s journey of faith and courage.

“We had an awesome opportunity to complete (Leilani’s) bucket list,” family friend Erin Port, who help organize the event, said. “She has taken the lemon life gave her, and made lemonade. She has been such a strong warrior. As a mom, my heart just breaks for what the Lahey family is going through, but it has been a true honor to watch this with such great faith. She just has a story to tell.”

According Leilani, she put this item on her bucket list because one of her favorite memories growing up was manning a lemonade stand during her aunt’s garage sales. She said she originally placed this item on her bucket list because she hoped to be able to relive this memory one last time before her passing.

“I like to make people happy. People like lemonade when it is hot out,” she said May 26. “I like doing (lemonade stands) because it is a memory.”

Although the event was organized prior to Leilani’s death, many people who had the honor of meeting the Harry Potter fanatic said the stands were a true testament of Leilani’s impact on Iowa, despite her 11 short years of life.

“Leilani was just a positive light. I remember when I met her as a baby, she was the first baby Help-A-Heart helped with a heart transplant,” said co-founder of the non-profit Emily Graber, who helped organize stands in Prairie City. “It has been such a joy seeing her grow up. I know she was only 11 when she passed away, but seeing those 11 years have brought me so much joy.”

Last Thursday, kids could be seen riding down Norris Street in Prairie City, covered in signs promoting their stands. In Colfax, a downtown business sold lemonade in honor of Leilani. Facebook timelines were flooded with photos of children manning lemonade stands from across the state with the hashtag #leilanislemonadestand.

“I will remember her smile. She always had a great smile,” co-owner of Colfax store Absolutely YOUnique Boutique, Tammi Schwickerath, said. “She has never wavered or questioned through any of trials and tribulations she has been through. She always knew no matter what she will be okay.”

Several lemonade stand participants said the story of Leilani’s faith has served as an inspiration for them. They said despite her young age, she has approached the concept of death with more bravery and courage than anyone they have ever met.

“Leila knows she is really sick and that she is going to pass away sometime very soon. For her, she is not scared. She asks us on a daily basis when she gets to go home. When she says home, she means heaven,” Leilani’s mother said May 26. “Leila said, ‘Mom, I’m sad that I’m not going to miss you.’ I laughed and said, ‘We are going to miss you here, but you are right, you aren’t going to miss us. I think you are going to anticipate us to be with you, but it is not going to be a sad ‘I miss them’ because you are going to have such an awesome time.’”

The family said they were surprised and humbled with the amount of support they received for their eldest daughter June 1. From the South Ankeny Fareway donating two tubs of powdered lemonade and Styrofoam cups for each lemonade stand to several stands continuing to share Leilani’s story throughout the weekend, the family said they are extremely thankful for the community’s support.

“All the lemonade stands, wow,” Carissa said in a Facebook post Monday. “It’s incredible what God can do and what He uses to reach out to people.”

A visitation was held for Leilani Friday at Ankeny Free Church. According to people who attended the visitation, there was a two-hour wait. Her funeral service was at Grace Church in Des Moines Saturday.

“I had strong faith for Jesus and I never gave up no matter what,” Leilani said May 26. “I want people to know that I was fun and nice.”

To donate to the family, visit gofundme.com/lahey-family-support-fund. For more information about the 11-year-old's journey, visit perfectlyportfamily.com or find the group Prayers for Leilani on Facebook.

Contact Anthony Victor Reyes at
areyes@jaspercountytribune.com