PITTSBURG — This year’s Lylahpalooza will benefit two children, Jackson Williams and Jacob Murray.
This will be the sixth annual Lylahpalooza which is organized by Leslie and B.J. Harris whose daughter, Delylah, passed away in 2013 from a heart defect complication. Leslie Harris said it was their community who surrounded them and helped them get through rough times.
The event originally benefited little Delylah and then later other children and families who could use monetary support as parents have to leave work, travel to hospitals and have many bills to pay.
“After that we continued it on with the help of family and volunteers to give back to the community that helped us out,” Leslie Harris said. “We chose to help them out because they either had to give up their side job or job to take care of their child.
“We understand the financial hardship that comes along with that.”
Baby Jackson was a healthy nine-month-old when suddenly he began to have seizures, his parents said in a release. He was taken to the hospital, but there was a long road ahead of him.
“They worked for 23 days to stop his seizures,” his parents said. “He was put into a coma twice and everything was tried but nothing worked.”
From there Jackson had multiple hospital visits including a craniotomy and the part of his brain causing the seizures was removed. Jackson was diagnosed with Alper’s-Huttenlocher disease which is a genetic condition affecting the mitochondria in his cells, it can cause many problems including seizures, developmental regression, very low muscle tone, visual impairment, hearing loss, swallowing problems, slowing of the GI tract and liver failure.
“There is no cure and no treatment other than supportive care,” his parents said in a release.
“The average life span after diagnosis is four to five years.
“He is being followed by nine specialists at Children’s Mercy which means a lot of trips back and forth to Kansas City.
“He can no longer swallow effectively or sit up or even hold up his head.”
Although he is fighting his condition, Jackson “is a happy, joyful baby despite everything that has been thrown his way,” his family said. “He seems as determined as his family to make the most of every day he has.
“He is a blessing to all those he is around especially his parents and two older brothers.”
In January, little Jacob had fallen and hit his head at church, however, it was decided no brain trauma was sustained. For weeks Jacob’s family noticed their child bruising with nearly every touch. His parents documented each incident and began searching for answers.
“Finally in late February it was determined that Jacob had low blood platelets, and on Feb. 28 a doctor from Children's Mercy Hospital told us he had leukemia,” his parents said in a release.
His family had to make distant drives to doctor visits to hospitals for viral infections and chemotherapy. Unfortunately, his mother and father had to close their businesses for the time being for his mother’s and foreseeable future for his father’s.
Jacob endured six rounds of chemotherapy and on Aug. 30 after his sixth treatment he had his chest port removed and returned to “normal life,” his parents said in the release.
“As of today, he still has to have a feeding tube to administer meds and food through, but is slowly but surely starting to eat and drink like he did before having to whip cancer,” his parents said. “Having endured this my life and my family's life will likely never be the same.”
The family’s experience opened their eyes to many things Jacob’s family said.
“Most importantly God’s love for us, and the compassion people of southeast Kansas have for those in need,” they said in the release. “In closing we are honored to be selected to receive this donation and will do our level best to make it to the event.
“Having worked through this rough patch my wife and I hope to use it as an example of how faith, family, and community can overcome almost anything put before it.”
Want to go to Lylahpalooza?
Lylahpalooza is from 1 to 4 p.m. on Sunday at the Crawford County Historical Museum grounds. There will be a bouncy house, bounce slide, a professional face painter, a balloon twisting artist and Two Girls and a Zoo will bring its petting zoo. There will also be a silent auction, T-shirt sales, and snow cones, cotton candy and popcorn for a dollar.
The T-shirt’s have been really special to the Harris’ because people have worn them during their travels. The have taken photographs while wearing the shirt and tagged the family in them on social media.
“It’s something people do to keep her legacy alive,” Leslie Harris said. “That’s something that means a lot to us.”
To join in on the fun it costs $5 per child and adults are free.
People can learn more on Facebook at Love for Lylah or their Facebook event page Lylahpalooza 2018.
Proceeds go to Jackson and Jacob’s families.