I recently received a phone call from Whittney LaHayne, head varsity volleyball coach at Banks County High School in Homer, Georgia. Coach LaHayne and I had an immediate connection….we both have a son with MCADD. She reached out to me and explained that each year her volleyball team hosts a fundraiser to support a cause. In 2021, they raised almost $1000 for Alzheimers. In 2022, they chose to fundraise for MCADD in honor of her son, Knox. She found our nonprofit, and reached out to me to inquire about Minutes Matter – MCADD and offer a $1650 donation on behalf of her team! What amazing work! We are so honored that they chose to support Minutes Matter- MCADD with this generous donation!
Coach LaHayne was kind to share her family’s story with us:
Knox LaHayne was born on Wednesday, May 13, 2020 at 2:58 pm. The LaHayne’s stayed the night in the hospital, and were discharged the following day. On March 15, Knox went to his first doctor’s appointment. He had lost 7 ounces, but the LaHayne family was assured that this was normal for a newborn. After his appointment, Knox and Coach LaHayne went home for a nap. At first he didn’t want to wake up for his feeding, but he finally did. He felt cool to the touch, but warmed up after he and his mom went outside for a walk. Coach LaHayne’s intuition told her that something wasn’t right. After eating dinner that same evening, Coach LaHayne went to feed Knox and as she sat down with him, his color began to fade and he began turning gray in her arms.
Coach LaHayne called for her husband and they dialed 911. Banks County EMS responded quickly. Within minutes they were there and were able to find Knox’s heartbeat. He was transported by air to Children’s Healthcare of Atlanta. After days of uncertainty and numerous tests, the LaHayne’s received the news that their sweet baby Knox had MCADD. Coach LaHayne said, “We’re blessed and God is good. Knox survived. We got to go home after a week and a day in the hospital. Sadly, other families have lost their littles to MCADD. This story we will tell his whole life to help bring awareness. God placed angels on earth in our path that night and the week that followed his birth.”
MCADD is a rare genetic metabolic disorder where the body has an insufficient amount of the enzyme that assists the body in breaking down medium chain fatty acids for energy. As such, the body is unable to break down fats for energy which can cause hypoglycemia. This can lead to a coma, or even death. Individuals affected by MCADD must avoid fasting for prolonged periods of time. Once diagnosed, MCADD can be managed through one’s diet which consists of low fat, heart-healthy meals and frequent snacks.
MCADD is typically discovered through newborn screening. Today, every state in the United States tests for this rare disease. The problem with testing, however, is that every state regulates their newborn screening. There is no federal law requiring particular newborn screening tests. (As such, for years, not all states in the United States tested for MCADD.) The other factor that varies among states is the time that it takes to return the newborn screening test. Therein lies a great problem. Children like Knox can suffer a metabolic crisis before their newborn screening results are returned, and MCADD is detected. Minutes Matter – MCADD is an advocate for bedside testing for newborns. Our hope is that one day, every newborn will be preliminarily screened for MCADD and other time-critical disorders before leaving the hospital. Thank you again, BCHS Volleyball, for contributing to this cause. Minutes Matter.
