Telling Lily’s Story The 9th Annual Lily’s Run
By Christopher Miller
The 9th Annual Lily’s Run will be taking place at Bald Eagle State Park on Saturday, March 12. Lily Warren, the namesake of the event, was born silently on March 5, 2009.
“I was 9 months pregnant when we lost her…we do not know much about her aside from feeling her and seeing her…when she was delivered, she had already passed,” said Lily’s mother Katie Warren of Lock Haven. “Our experience is a bit different than others because we did not hear her, but we held her and took pictures with her and we definitely have different memories than others.”
Lily had what is known as Trisomy 18, which is an extra 18th chromosome. “With Trisomy 18, children who are born with it have a pretty high mortality rate and many do not live past 12 months, but there are rare cases of children who reach their teens,” said Chad Warren, Lily’s father. “About 50% of babies with Trisomy 18 are carried full-term and are stillborn.”
Chad and Katie did not know their baby had Trisomy 18 during the pregnancy. “I started going into labor and had gone to the hospital at 32 weeks, but those were false contractions which did not seem normal, so the doctor wanted me to get checked,” said Katie. “We saw a specialist at Geisinger in Danville for testing where the doctors noticed that Lily was measuring really small for a baby.”
Chad then added that their other children measured in as big babies when they were born. “Bryce was a big boy, and the others were bigger, but Lily was just very tiny.”
“We were sent to Danville and for two and a half weeks we traveled there every day for ongoing tests,” Katie said. “It was through genetic testing that we learned about Trisomy 18.”
Prior to the full results of the genetic testing, Chad and Katie were notified that it was not Trisomy 18. “The first test was like a rapid test, like the COVID tests today – it was about 90-93% accurate, and that test said it was not Trisomy 18,” said Chad. “But about three days later the geneticist came back with the full test results and it was 99% positive for Trisomy 18.”
“We were excited when we were told that the rapid test results were not genetic, that it was not Trisomy 18,” said Chad, “but then it was so hard when the doctors came back and said they were wrong and that Lily had to stay inside the womb and would come when she was ready.”
The doctors then had some tough conversations with the Warren’s such as determining how long they would want Lily to be on life support and funeral planning for their infant daughter. “When you’re having a baby you do not think about having to bury your baby,” Chad said.
One out of 2,500 pregnancies has a genetic marker for Trisomy 18. “It just happens, it is a genetic anomaly,” said Chad. “When we found it and learned about it, we learned that it is not one of the genetic disorders that are hereditary,” meaning neither Katie nor Chad carry a genetic marker for it in their genes.
Two years after Lily came little baby Zaylie. “That pregnancy was difficult, to be honest,” Katie said. “It took us through the exact same time of year, the same sequence and progression of everything we were feeling two years before.”
Katie and Chad were afraid of having more children. “We were terrified, actually, for a while we were definitely not going to have anymore, but something that helped us was a support group we went to at Evangelical Hospital in Lewisburg,” where they went faithfully for years. “Once a month we went and talked to other families who understand our situation; it was comforting knowing we were not alone, and it was helpful to talk to others and firing ideas and situations back and forth…one of the hardest things is that we do not want others to forget about her, so we talk about her in a comfortable space and we incorporate her in our lives still today – we do special things for her and from her to our other kids.”
“The child born after a loss is your Rainbow Baby, because you always see a rainbow after a storm, and that is Zaylie,” Katie said. Their children consist, in order, of Bryce, Lily, Zaylie, and Ryder. “We still have a cake and a birthday party for Lily just like it’s a normal birthday, and she has a Christmas stocking and she does something special for the other kids that is from her…we blow bubbles and Bryce was three at the time, and loved blowing bubbles so he said he was blowing bubbles to Lily in heaven.” In fact, the kids race bags at the races all have bubbles in them.
The run honors Lily and all babies who were lost too soon. One of the aspects of the race is the Butterfly Lane. “We put the names of babies lost too soon on a butterfly and we run through Butterfly Lane during the last 150 meters and the runners are then surrounded by butterflies and bubbles from a bubble machine,” said Katie.
Those diehard runners out there will notice that this is not a normal 5K in the traditional racing sense. “We are really weird with numbers, so the run is 3.59 miles, but a normal 5K is 3.1 miles…the 3.59 is Lily’s birthday – March 5, 2009 – 3/5/9,” Katie explained.
The race has been designed and formatted to do three specific things: benefit the Trisomy 18 Foundation, benefit the Clinton County Special Olympics as if Lily were here today she would be a special needs baby, and it helps to benefit a family each year who may need help with things such as gas for appointments, food expenses, “those sorts of things that people do not necessarily think about, the unexpected,” said Katie. “Over the past 8 years we have raised and donated over $30,000 in Lily’s name to the Trisomy 18 Foundation, the Clinton County Special Olympics, and multiple families in the community…we have also been able to donate hundreds of books to start a library in Honduras, food items for the Blanchard Church of Christ Food Pantry, school supplies for the Salvation Army after school program, pet supplies for the Clinton County SPCA, and have been able to donate to the Mark the Shark Toy Drive.”
There is also a door prize/food collection that will benefit the Haven Cupboard, a food bank for struggling Lock Haven University students, where each non-perishable food item that is donated will equal an entry to win the door prize.
If you would like to participate in the run/walk but are not able to in-person, there is a virtual option where you time yourself participating and send it along by email (StarsForLily@gmail.com) to Katie and Chad Warren with a picture, if possible, of yourself completing the race.
“This race is dedicated to Lily and all of the babies who left this world too soon,” the Facebook Event for this group states. “A life may last just for a moment, but a memory can make that moment last forever – thank you for helping us to keep her memory alive.”
9th Annual Lily’s Run
3.59 mile (more than a 5K) Run/Walk or Virtual Option
Saturday, March 12
Bald Eagle State Park
Beach Pavilion
$30 registration on
www.webscorer.com,
Find Event Registrations, Event Name: Lily’s Run
Kids Fun Run – register on the day of
Registration @ 10am, race starts at 12pm
Awards for top finishers!
Contact: Katie Warren 570-660-8973
StarsForLily@gmail.com
