The Story of ivPolePals
The Salser Family
Read The Story of ivPolepals here!
Expectations were high. Deric and Lynne Salser prepared for the arrival of their second child in the summer of 2002. But in the final days of a “routine pregnancy” Lynne showed signs of distress. Tests showed an unusual condition (HELLP Syndrome) that threatened Lynne’s life. The “cure” was an emergency C-section that brought relief…and a sweet baby girl, Alexandra!
Alex was unaffected by her mother’s traumatic experience. But 36 hours later, she suddenly experienced cardio respiratory arrest. She was quickly resuscitated, but a diagnosis took five long days. Alex has LCHAD, an extremely rare genetic metabolic disease. She’s missing an important enzyme we need to receive energy and nutrients from fats in the things we eat.
Despite the rough start, Alex adjusted to IVs and a special formula made for patients with metabolic disorders. Thankfully, it worked for her. And the little fighter was thriving! She wasn’t ordinary and raising her wouldn’t be “ordinary” either! A special formula gave her energy, but it requires a strict round-the-clock feeding schedule as well as sticking to a low fat diet.
Deric, Lynne, and older sister Claire began learning a new “normal” that frequently included a hospital routine. When Alex gets a virus or infection, sometimes she develops hypoglycemia a can’t eat. And without enough food, Alex’s body begins fasting “looking for food” from “fatty” tissue, potentially damaging her muscles and organs. So when intake is low, immediate hospitalization is critical…complete with life-sustaining IV nutrition until the metabolic crisis is over.
Through the years there have been lots of hospital visits, specifically to Medical City Children’s Hospital in Dallas, Texas. Those days of recovery were lightened by clever characters that Alex and Lynne created to make the ever-present IV pole—with its life-giving fluids—“kid-friendly.” Watery and Flo came to life, making the necessary pole tolerable for the spunky little patient. The cheery creations—now known as ivPolePals—have multiplied! They’re ready to be released into the world as critters, picture holders, message boards, patches, logos, and inspirational messages. They offer encouragement for children and adults alike. Each one comes with the “special assignment” that worked for Alexandra—to decorate its owner’s room for recovery!
A recent update on Alex: Throughout middle school, Alex encountered many difficulties with her body not being able to keep up with the energy demand that adolescence requires. Still, she participated in cheerleading, band, volleyball, and academic clubs. Despite physical therapy and creative ideas, her health was declining. She was sent on a Make-A-Wish trip to Disney World and Universal Studios in that time. Soon after her trip, she began needing to walk with a walker and then became wheelchair bound a few short months later. As Alex completed her freshman year of high school she was rapidly declining. Through a compassionate use trial, Alex was able to start a new metabolic supplementation called Dojolvi—a recently approved FDA treatment that is the first to ever be created for those with Long Chain Fatty-Acid Oxidation Disorders. Since then, her body has been able to get the energy it needed to slowly rebuild back strength. Alex has worked through many types of physical rehabilitation, and she has gained the ability to walk again! After two and a half years of rehabbing her physical function, Alex began experiencing illnesses and metabolic symptoms differently as she was now approaching adulthood. She has had to learn to be an advocate for herself, and has loved sharing her story with others. Alex began experiencing a new metabolic symptom of rhabdomyolysis episodes where too much physical exertion in physical therapy was causing her muscles to breakdown. While Alex experienced her first two episodes of rhabdo in her senior year of high school, she was still able to experience the things she loves to do. Some of these activities included participating in the band, playing her musical instruments, hanging out with friends, and riding the horse at hippotherapy.
Alex has faced many challenges throughout her high school years. One thing that has remained constant is her determination and “never give up” mentality for her goals. Alex has now graduated high school with the honors and credentials she set out for. Her graduation experience was complete when she walked the stage to receive her diploma! Alex now attends Texas Tech University and is pursuing a degree in Human Development and Family Sciences with a specialization in childhood along with a music minor! She hopes to become a Certified Child Life Specialist to be able to help patients and families cope with the challenging situations they face in the hospital. She also would like to bring ivPolePals along with her in the child life profession. While there are many challenges Alex faces on a daily basis living with a chronic disease, her fight and determination to live life to the fullest has never waivered.