We are kicking off this year’s blog posts with our wonderful Miracle Kid, Natalie Stephanouk! Natalie began receiving care at Piedmont Columbus Regional the day she was born. Since then, she has grown into the energetic and social 8-year-old we see at Main Event each year. View our Q&A with Natalie’s mom, Allison, to read what makes this Miracle Kid so special!
Natalie’s miracle story:
“Natalie is an 8 year old with Smith-Magenis Syndrome. She was born premature at 34 weeks at Piedmont Columbus Regional. She was in the NICU for four days until she was transferred for intestinal surgery and remained in the hospital for 7 weeks. A NICU nurse in the delivery room noticed a few very subtle abnormalities about Natalie on the day she was born. This initiated the testing that uncovered a missing piece of genetic material from one of her chromosomes. The disorder occurs in approximately 1 in 25,000 live births and is under-diagnosed. Smith-Magenis Syndrome causes global developmental delay, complex medical issues, sleep disturbances, and challenging behaviors, including self-injury. Because of the expertise of the medical staff at Piedmont Columbus Regional, we were able get a diagnosis and start early intervention therapies with Natalie from birth. Natalie is doing extremely well and is an absolute ray of sunshine to anyone she meets. We are beyond blessed to have this beautiful and precious angel in our lives and are very grateful that Piedmont Columbus Regional and the Children’s Miracle Network were there to give Natalie such a fantastic start.”
What has been the biggest lessons to come out of this experience?
“I think that the blessings that have come as a result of Natalie’s struggles are love, acceptance, and empathy for others. Natalie is always the first to console a friend who is hurt or struggling. She genuinely and freely loves everyone around her and has been known to form deep connections with people she has only briefly met. She is constantly making cards for people she knows and enjoys giving away her
What is a typical day like for Natalie?
“Due to the sleep disorder that is a common feature of Smith-Magenis Syndrome, Natalie is a very early riser. We typically start the day by practicing daily living skills such as dressing, grooming, personal hygiene, and tidying up. Challenging behavior is another very common feature of Smith-Magenis Syndrome and we are always working to make improvements in this area by strictly following Natalie’s behavior plan. Natalie works very hard during her multiple therapy sessions each week, including, OT, PT and speech. Natalie loves school and is in a general education classroom with additional support from her special education teacher. She is extremely thoughtful, caring and very social. I have been told that she is the most well-known person in the school, second only to the school principal!”
What does AUDM mean to you and your family?
“The Auburn University Dance Marathon is an incredible organization and is very special to Natalie and the rest of our family. The passion and dedication these students have for raising funds for the Children’s Miracle Network is outstanding. This phenomenal group of volunteers has formed a beautiful bond with Natalie, as well as all of the other miracle children. Natalie looks forward to every single event where she is able to play with her Auburn friends.”
What is Natalie’s favorite game or toy?
“Natalie loves Rubik’s cubes and is working hard to learn how to solve them.”
Who is Natalie’s favorite superhero?
“Natalie’s favorite superhero is Wonder Woman.”
What is Natalie’s absolute favorite activity/thing to do?
“Natalie’s absolute favorite thing to do right now is to swim.”
Courtesy of Allison Stephanouk