PITTSBURG, Kan. —
To a first-time observer, Delylah Harris’ third-floor room at Children’s Mercy Hospital in downtown Kansas City is her family’s world.
The decorations taped carefully to the walls — rainbows and hearts done in crayon by her older sister Quorynn, 5, and messages of hope by her mother, Leslie, above the crib and the machines — suggest the family has been here awhile.
They have. For months at a time since Delylah was born on Sept. 13, 2012, the pediatric intensive care unit has been their home.
But their world does reach beyond the walls of Room 41. The piles of books on a sunny window seat in the corner are inscribed inside by friends who live at a distance and hint at the support the family is receiving.
“At your tender age of one, you’ve inspired so very many people,” wrote Betty Harris, who works with Delylah’s father, B.J., at the Crawford County Convention and Visitors Bureau in Pittsburg, Kan. “Some of them have never even met you, but we all love you. Your strong fight for life shows us all that anything is possible. Keep getting stronger every day, Delylah, because an exciting and wonderful life is waiting just for you.”
It is that kind of support, say her mother, Leslie, and her father, B.J., that have given them strength through the first year of Delylah’s life.
“She has so many people behind her,” said Leslie, her voice choking with emotion, as the family prepared to celebrate Delylah’s first birthday Friday. “It’s really touching.”
In the past month, more than 50 Crawford County businesses have come forward with offers of large prizes and corporate sponsorships for an upcoming fundraiser that has very nearly taken on a life of its own.
The Finishing Touch, a Pittsburg frame shop, has matted more than 400 colorful, whimsical hearts Leslie drew while at Delylah’s bedside and sold them during Pittsburg ArtWalk.
Natalie Douglas, a seamstress, has altered Delylah’s tiny clothing and added Velcro attachments so that it fits around the feeding and oxygen tubes.
And when Leslie stopped by Celebrations by Lori, a local bakery, to buy cookies to take to the nursing staff at Children’s Mercy in observance of Delylah’s first birthday, she was not allowed to pay.
“It’s hard not to cry in public,” Leslie said of the support they’ve received.
Leslie and B.J. had no indications the pregnancy was anything other than normal.
But when Delylah was born, doctors immediately took her away, and Leslie, who had undergone a cesarean section, was left alone to wonder what had happened. She was dazed but worried that something was wrong.
“They had a hard time getting her oxygen saturation up,” Leslie recalled. “Testing showed she had a large heart murmur.”
A medical helicopter whisked Delylah away to Children’s Mercy. The next few days were the longest of their lives, Leslie said, as she waited at Via Christi Hospital in Pittsburg, Kan., to recover enough to travel. B.J. was at Delylah’s side in Kansas City.
Testing revealed the baby was born with Tetralogy of Fallot, a congenital heart defect that involves four anatomical abnormalities. Further testing also revealed she has a chromosome disorder known as DiGeorge syndrome.
It can manifest itself in many ways, including learning delays, schizophrenia, a loss of hearing, a low immune system, missing thymus and facial deformity. A few, like facial deformities, have been crossed off the list for Delylah. With others, it is too early to tell.
“When they told us, the room was spinning. I was just nauseous,” Leslie recalled.
But since then, she has delved into learning and understanding the details of their daughter’s condition.
Delylah has been home to Pittsburg a few times since birth, but never for long. Each time, a health setback has landed her back in intensive care at Children’s Mercy. She has spent the bulk of 2013 in the hospital.
In March and July, surgeons performed surgery on her tiny heart. She also has endured viral infections, yeast and bacteria in her blood, and a blood clot. Most recently she received a tracheotomy and a G-tube. She requires ventilator support.
B.J. and Leslie grew up in Crawford County and met while attending Pittsburg State University.
A few years ago, B.J. started a new job as the director of the Crawford County Convention and Visitors Bureau, where he focused on attracting events that would improve the area’s economy and showcase its strengths.
Leslie, who had trained for a career in graphic design and communications, landed a job with the Southeast Kansas Humane Society, where she helped coordinate and publicize fundraising and adoption events.
Now, they’re living on just one income; Leslie quit her job so she could be in Kansas City nearly round-the-clock and because she knew that Delylah would never be able to go to a day care with a weakened immune system.
The family also has incurred significant travel expenses and expenses at preparing their home for Delylah’s arrival in mid-October.
“We are converting our dining room to be her nursery, because we can’t get her equipment upstairs to the second floor and we have no heating and air conditioning up there,” Leslie said.
“We also need to upgrade our electrical so that it accommodates the machines and have our air ducts and vents cleaned. And we’ll be buying a generator to take precautions in case the power goes out. She’ll have another heart surgery; this will be an ongoing thing for several years for her.”
It’s difficult for them to come to grips with accepting financial help for those expenses. But they are grateful, they said, for what the community is doing.
“She’s become an important part of peoples’ lives, and they’ve become invaluable to her,” B.J. said. “Coming out of school, we chose to stay put, and we’re glad we did. It’s an entire community that’s aware and involved.”
With a team of volunteers, J.J. Karlinger, a Pittsburg city employee, took on coordinating “Lylahpalooza,” an all-day festival-like event slated for Sept. 28.
“To even imagine what they are going through …” Karlinger said. “You can’t help fix the child, so if you can at least help raise money to help the family … . It’s something I always have in the back of my mind so that when I do have time, I get busy on it.”
Karlinger, who plays in the band Clean Slate, also wrote and recorded a song for Delylah with fellow musician Chris Kmiec.
Jessi Reading, a Pittsburg stay-at-home mom, is heading up a silent auction as part of Lylahpalooza.
“Comeau Jewelry donated necklaces, and Backyard Discovery donated a giant swing set, Bishops Studio donated a $500 portrait package, MAC Fitness donated several memberships, and Millers printed 400 or 500 posters to advertise,” Reading said. “It’s incredible.”
Reading also took on coordinating delivery of frozen casseroles and other foods via the online tool mealtrain.com. She also organized wepay.com/loveforlylah, a site where monetary donations can be made.
The Harrises, meanwhile, are trying — and by all accounts succeeding — to stay positive, pouring their love and focus into their daughters and not dwelling on what might have been.
“Feeling sorry for yourself isn’t going to change the situation,” Leslie said. “You have to embrace it. Accept, then act, whatever the current situation is — accept it as if you chose it.”
Leslie said the experience likely will lead her along a path she hadn’t intended — perhaps to help others in a similar situation, perhaps establishing a foundation to benefit other families — although it’s too early to tell.
“You certainly empathize with others in this situation. It’s enriched my life in that way,” she said. “We appreciate each other so much more.”
Lylahpalooza is set for noon to 11 p.m. Saturday, Sept. 28, at the Crawford County Fairgrounds on Highway 47 east of Girard, Kan.
The event will include live entertainment throughout the day, as well as kid games, a silent auction, raffles, a bouncy slide, food and drink vendors, and a bake sale. Entry into the event is a free-will donation at the gate. Proceeds will go to help the family.
Magician Larry Fleury will kick off the entertainment at noon, followed by hourlong sets from local bands starting with the Jimmy Karlinger Band, followed by Recycled, Subject 2 Change, The Wayward Bettys, Grab Bag Union, AZIZ, Take The Day and Clean Slate.
Lylahpalooza T-shirts and koozies will be sold, along with prints of hearts that Delylah’s mom drew. Kid games will cost $1 to play. Alcohol will be available for purchase.
Monetary donations also may be sent to “Love for Lylah” at First Federal Bank, 102 N. Broadway, Pittsburg, Kan., 66762, or may be made online at www.wepay.com/donations/loveforlylah. Delylah’s story and progress may be followed on her Facebook page “Love for Lylah.”