The Beacon 2019 | Issue 1 2019 | Issue 1 - Page 6

YLIE ALUMNI ADVENTURES THANK YOU What an amazing community we have! Our students are able to continue reaching developmental milestones because of the giving hearts of you, our community. These two events were a HUGE success because of the sponsors, donors, participants, and supporters in Tulsa and the surrounding areas. Thank you to all that came alongside us to help us continue God’s work! Lindsay Nozak, Director of Events and Marketing LAPS FOR LITTLE ONES SPONSORS Platinum Sponsors H. A. & Edna L White Foundation BY LISA KILLINGSWORTH, KYLIE’S MOM When we told our son he was possibly having a little sister, he said “Oh I know, it’s a girl and her name is Kylie Jordan!” He was 3 years old and could not wait to be a big brother. After having a normal pregnancy and birth, we brought our baby girl home. Within the first few days, which turned into weeks, of constant crying we spoke to our pediatrician. She said it was probably just colic and every baby is different… to give it time. However, we weren’t rookie parents. We knew something wasn’t right. Kylie would not look at you while feeding and she cried almost 24 hours a day. We were unaware of any medical issues until she began having seizures at the age of 5 months. We were then thrust onto the roller coaster we call life. The pediatrician immediately referred us to a local neurologist and the investigation began. After 6 months of going down several different paths the decision was made to refer Kylie to Columbia Presbyterian in NYC for a fresh muscle biopsy and a lumbar puncture. Kylie was diagnosed with a rare mitochondrial metabolic disorder causing infantile spasms, cortical visual impairment, and cerebral palsy. It felt like a death. Sad, scared and hopeless were some of our initial emotions; however, somehow the Lord always steps in just when you don’t think you can take anymore. We put our faith in the Lord and our lives have never been the same. She started the Ketogenic diet and her seizures slowed, then eventually stopped. At the suggestion of our case manager from Sooner Start, we called the Little Light House. We took a tour as soon as possible, put Kylie on the waiting list ,and began praying it would not take the two years they had estimated. Ironically, Kylie enrolled one month shy of two years…she started in the yellow class as a 3-year old, and this was the 5| THE BEACON beginning of the things she would “start” while there!! She started sitting up, putting her feet on the ground to stand, signing “Hi” when greeting people, and dancing to music during praise and worship. So many “milestones and miracles” there isn’t time to write about them all; but the biggest thing we began to have was hope for the future. Someday Kylie will be able to select her own life verse; but until then, we have selected 1 Corinthians 13:7 Love always protects, always trusts, always hopes, always perseveres. Graduation day came all too quickly! Kylie started Kindergarten in 2009 at our neighborhood school. We soon learned how spoiled we were by the Little Light House. We were finding it difficult to find a school program that matched their caliber. We made the decision to move to the Jenks school district when Kylie was ready for middle school. She has settled there nicely and continues to work hard on her goals. She walks with the assistance of a walker but would rather hold hands with a friend and take a stroll. She uses a few signs to communicate and is working with her teacher and therapist to use an iPad. She has friends, one of which was in her class at the Little Light House. Like a typical 9th grader, her favorite classes are physical education and music. However, one of her favorite activities every year still involves the Little Light House. She loves to participate in Laps for Little Ones. It is always a glorious day when she is able to reunite with old friends, teachers, therapists and staff; all while raising funds for the school that has had such a profound impact on her life. We are all so grateful, thankful, and blessed to have been a part of the Little Light House and have full faith Kylie will continue to be the light of Christ and one of their many ambassadors for life! Premier Sponsors A. & Mary K Chapman Charitable Trust A G Equipment Major Sponsors Hercules Tires Burnett Windows and Siding Event Sponsors Certa-Pro Painters Coca-Cola Fizzo Water MINI-LAPS SPONSORS Miracle Maker Nantz Cattle Company Tulsa Gold & Silver The Mike and Susan Burkhart Foundation, Inc Harrell Eye Care Milestone Maker H.A. & Mary K. Chapman Charitable Trust Shining Light Sponsors Mid-Way Transportation Mariner Foundation The John and Denise Redmond Charitable Fund Graduate Sponsors Fizzo Water Jenni Burkitt, DDS Norwex Burnett Windows and Siding Phillips 66 Re/Max Tulsa WPX Energy Envision Homes Crossfit Skiatook Event Sponsors AVIS Budget Group Coca-Cola Fizzo Water