34 FEBRUARY 2024 By Mallory Gleich S ix-year-old Peyton Augustin was born at 30 weeks. She weighed two pounds, eight ounces – and from that small beginning, Peyton’s parents knew they were going to have a difficult road ahead. Doctors discovered that Peyton was born with an imperforate anus, a congenital malformation where a normal opening is absent at birth. The doctors were unsure if this was Peyton’s only diagnosis, so she was immediately admitted to the NICU for lots and lots of tests. “It took about eight weeks for them to formally diagnose Peyton with VACTERL syndrome,” mom, Katherine, said. “It was hard to tell what was actually going on because she was born at two pounds, and they could only do so many invasive tests. The diagnosis was mostly just what they suspected and was later confirmed.” VACTERL syndrome encompasses multiple body parts: V- vertebral abnormality A- imperforate anus C- cardiac defect T- tracheoesophageal fistula E- esophagus R- renal L- limb anomalies Peyton was also missing the T10 vertebrae, had a narrowing esophagus (which later led to feeding issues), and was born with a hole in her heart. A small blessing is that she had no renal or limb anomalies. “For most of Peyton’s abnormalities, we had to follow up with individual specialists to determine the best course of action for each. Our life was filled with doctor visits and tests,” Katherine said. Peyton had to wait eight months for surgery, and immediately after bringing her home, her parents encountered another challenge: getting Peyton to eat. They brought her to specialist after specialist and eventually to a feeding therapist. For months, they struggled to get her to drink a minimal amount of milk to keep her hydrated and growing. “No one could figure out what was going on because she was not spitting up or having pain when eating. She didn’t appear to have much interest,” Katherine said. “Things got so bad that we had to go to Phoenix Children’s Hospital and get a feeding tube.” Soon after being admitted to PCH, Katherine ran into a friend who was also at the hospital. The two got to sharing stories, and the friend suggested booking an appointment with Dr. Fayez Ghishan, head researcher at Steele Children’s Research Center (SCRC) in Tucson. That’s also when Katherine learned about PANDA. People Acting Now Discover Answers is a Phoenix-based women’s philanthropy board that raises awareness and funds to benefit research for childhood diseases through the University of Arizona’s Steele Children’s Research Center. SCRC is the University of Arizona’s Department of Pediatrics research division. The physician-scientists and researchers are devoted to improving children’s health through scientific, translational, and clinical research in areas such as autism, autoimmune disorders, cancer and blood diseases, diabetes and GI disorders, to name a few. “We got in right away with my friend’s referral and drove to Tucson as fast as Dr. Ghishan could get us in,” Katherine said. Peyton went through several tests that confirmed her narrowing esophagus. She also did a swallow study, where it was discovered that she had difficulty swallowing and breathing when she ate. Dr. Ghishan put Peyton on two different medications to help, and within two weeks, she was entirely off the feeding tube. “Our lives were improved ten-fold. We still had surgery on the horizon, but we finally knew that her feeding issues were not necessarily related to her other issues, and it brought great relief,” Katherine said. Following the surgery was a few months of enemas and dilation – something Katherine said was painful for Peyton and for them – but in the scheme of things, it was a “small blip.” She had follow-up appointments with bowel management, cardiology, neurology, endocrinology and orthopedic specialists. And while Peyton still has scoliosis due to her spinal defect, the hole in her heart has since closed, meaning she won’t have yet another surgery. “Peyton will likely always have a small stature, and takes steps daily to manage her bowels, but she was fully potty- trained despite what specialists told us by three years old,” Katherine said. “On the outside, she appears just like any other kindergartener, but she has gone through a lot for such a young lady. She amazes us every day.” Peyton’s incredible journey From 2.5 pounds to thriving kindergartner About People Acting Now Discover Answers (PANDA) Peyton Augustin, who was born with VACTERL syndrome, is now a kindergartner at CLS. PHOTO COURTESY OF KATHERINE AUGUSTIN For 24 years, PANDA has been on a mission to make the world brighter and healthier for children. PANDA’s Children Helping Children Fashion Show and other fundraising activities have contributed over $30 million to the Steele Children’s Research Center and has helped researchers secure more than $110 million in grants. The fashion show highlights local children and Steele patients walking the runway to help raise funds for research and treatment plans. Peyton will walk in this year’s show. PANDA also has a yearly goal focusing on one area of research, and this year’s goal is to bring a first-of- its-kind pediatric biobank to The Steele Children’s Research Center. A biobank program allows doctors and scientists to “collect, annotate with pertinent health information, and preserve clinical samples in long-term storage for future research use.” The biobank involves high-tech, continuously monitored deep freezers, where biological material such as blood or tissue samples can be preserved by physicians to assist research projects. The samples help determine response to treatment and other research aimed to understand the disease process better and develop new therapies. PANDA will be looking specifically at creating research and data around certain rising autoimmune diseases in children, like asthma, kidney disease, liver disease, and intestinal and rheumatological diseases. March 24 is PANDA Lemonade Stand Day, where children across the Valley help turn lemons into lemonade by raising money for rare diseases. Visit the website for a full list of lemonade stand locations. May 11 is PANDA’s 24th annual “Children Helping Children” Fashion Show and Luncheon presented by Fox Restaurant Concepts at the Arizona Biltmore. The event includes a silent auction, cocktail hour and after party. azpanda.org PANDA members with Dr. Fayez Ghishan: Ashley Richardson, Emily Snell, Kim Willems, Molly Kaufman and Stacy Medeiros Holzhauer. PHOTO: ALLISON TYLER JONES
35 FEBRUARY 2024 ARCADIANEWSARCHIVES.COM Career Corner Career Corner Career Career expert and founder of Copeland Coaching. copelandcoaching.com BY ANGELA COPELAND T hese first few months of 2024 are a time for new beginnings. It’s a time when we often set our goals for the remainder of the year or commit to change within our personal lives or our careers. It can often help to begin with the end in mind. If you create an image of the end goal, it’ll be easier to take the steps to complete the change you crave. Often, it can be hard to see the end goal in the beginning. This is especially true when you are in the middle of a difficult situation. Let’s face it: the last few years have not been easy. One thing remains true. If you make small steps in the right direction, you will eventually find your way. In other words, good choices will lead you to more good options. Eventually, your destination will reveal itself. If you’ve taken many positive steps, you are certain to find yourself in a positive place – even if there are a few wrong turns along the way. If you have a clear vision for the future, set an intention. Break it down into bite-size steps that you can do over the year. Create a timeline. Find friends to help hold you accountable. Reach out for help as you need it. Not having a vision of the end doesn’t mean you won’t find yourself in a great spot. I’ve often spoken to job seekers who are distressed. They have two good job offers and aren’t sure which to choose. Both opportunities are good options. This is often the case in life. There are many paths that will take you to a good outcome. The first thing you need to do is to get moving. Staying stagnant in a situation that isn’t working for you will not lead you to where you need to be. It will only make it harder to get yourself out. No matter what your goals are for 2024, this is a great time to polish up your professional presence. Ensure that your LinkedIn profile is up to date. Set aside some time to update your resume. This is likely the time of the year when you will complete your performance evaluation for the previous year. Use the opportunity to outline the impact of your contribution to your company. In addition to making a great case for your bonus or raise, you can use this information for your resume. Finding a job is hard work, especially when you are proactively looking. Start early and keep moving. The more effort you put into your search, the more options and opportunities you will ultimately have. Take one positive step at a time. One step at a time