Annebelle was born a perfectly healthy baby girl. At 9 pounds, 2 ounces, and arriving at 41 weeks gestation, her delivery was smooth and uneventful. My husband and I were overjoyed to bring our second child into the world. We spent the usual couple of days in the hospital after her birth, soaking in every sweet moment with our little girl.
The days that followed were filled with the usual new parent woes—breastfeeding difficulties, sleepless nights, and adjusting to life with two kids. I was in heaven, a mother of two amazing, healthy children. Little did I know, my world was about to be rocked in a way I never could have imagined.
It all changed one fateful day when Annebelle was diagnosed with Incontinentia Pigmenti (IP), an extremely rare genetic condition that runs through my family. The shock of the diagnosis was overwhelming. During my pregnancy, I had never tested for IP, and I had no idea how severe the disorder could be or what it meant for my baby’s future.Posted December 27, 2025
Until that moment, Annebelle showed no signs of the disorder. She was a perfectly healthy baby, so I naively assumed we were in the clear. But as the diagnosis sunk in, I realized that life was about to take a very different turn.
Incontinentia Pigmenti (IP) is a rare genetic disorder that affects many parts of the body, including the skin, eyes, teeth, and most notably, the nervous system. The condition is linked to various neurological issues, including epilepsy. Because IP was so common in my family, and everyone who had it experienced relatively mild symptoms, I never once considered the possibility that it could be more severe.
I had heard of the occasional blister or pigment change, but nothing prepared me for the harsh reality that IP could cause life-altering conditions. My ignorance left me unprepared for the severity of the disorder’s effects.
Along with the neurological problems, IP caused blisters to form on Annebelle’s limbs and dark, pigmented swirls that covered her body. These changes in her appearance were the first signs that something was terribly wrong.
I felt my heart sink as I watched these marks appear on my baby. I couldn’t help but wonder if I had missed something—if I had failed her in some way. As if the physical changes weren’t enough, the more severe issues were yet to come.
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Annebelle was rushed to the NICU when her condition worsened. It became clear that her seizures, which started suddenly and without warning, would require immediate attention. For seven long days, I watched helplessly as doctors and nurses worked tirelessly to control her seizures.
The medications they administered slowly began to work, but I couldn’t shake the feeling of fear that clung to me. I knew my baby was fighting for her life, and it felt as though every minute spent in the NICU was a lifetime of uncertainty.
Those seven days in the NICU were the longest of my life. My heart broke every time I saw Annebelle, so tiny and fragile, hooked up to machines, fighting her own body. The baby who had once been perfectly healthy was now struggling just to survive.
I couldn’t understand why this was happening. How could this beautiful, strong little girl, who had seemed so healthy and full of life, now be facing such a devastating condition?
When Annebelle was finally stabilized and the seizures were under control, the diagnosis was confirmed: Incontinentia Pigmenti and epilepsy. But the news didn’t stop there. The doctors also informed us that there was significant damage to one half of her brain due to the seizures.
The extent of the damage was unclear at that point, but it was obvious that her future would be anything but typical. My heart shattered for my daughter, for the life she would now have to face—one full of medical complications, therapies, and uncertain outcomes.
I was devastated, but I knew I had to be strong for Annebelle. We had been through the most terrifying time of our lives, but she was still here. We had a chance to fight for her, to give her the best possible future despite the challenges. Annebelle’s strength, even at such a young age, inspired me. She had already fought so hard to survive, and now it was our turn to fight for her future. We would face whatever came next together.
Annebelle’s time in the NICU was only the beginning of her long journey. Her condition required constant medical attention and therapies that would continue for years.
We began to learn more about IP, about the ways it would affect her body and her brain, and what we could do to help her navigate this life. Epilepsy, cognitive delays, and physical disabilities were all part of her reality, but we were determined to give her the best chance possible.
As the days passed, we learned more about how to care for Annebelle. The road ahead was daunting, but we took it one step at a time. We attended countless doctor’s appointments, and as Annebelle grew, we watched as she faced her challenges with the same quiet strength that had carried her through the hardest moments of her life.
There were tough days, days when I doubted myself and questioned what kind of life Annebelle would have. But there were also days when she amazed us, when she smiled despite everything, when she learned new things, and when she showed us just how much fight she had in her.
Annebelle may have started her journey with a rare, devastating diagnosis, but she has never let that define her. She is so much more than her condition. She is a fighter, a survivor, and a source of endless inspiration to everyone who meets her.
She has taught me more about resilience, hope, and love than I could have ever imagined. Every day with her is a gift, and every challenge is an opportunity to show her that she is loved and supported no matter what.
Today, Annebelle is thriving, surrounded by the love of her family and the support of a team of medical professionals who have helped her along the way. Her future is still uncertain, but one thing is clear: she is a fighter, and she will continue to defy the odds.
No matter what the world throws her way, Annebelle has already proven that she can handle anything with grace, courage, and a smile that lights up the room. She is my miracle, and I am endlessly grateful to be her mother.
Cade Wininger’s 24-Hour EEG: A Journey of Play, Comfort, and Love at Riley Hospital.T1174
For 2-year-old Cade Wininger, a typical day of play and excitement was slightly different on Thursday. Rather than running around outside or playing with his twin brother, Cade was at Riley Hospital for Children, undergoing a 24-hour EEG, a test that measures the electrical activity in the brain. Although the procedure was necessary to monitor Cade’s health, the Wininger family—Cade’s parents, Colton and Ashley—were determined to make this experience as comfortable and even as fun as possible for their son.
The family arrived at Riley Hospital Wednesday evening, and after a peaceful night’s rest, they were ready to start their day early Thursday morning. As with any hospital visit, there was a mix of excitement and apprehension, but Cade’s parents were grateful for the hospital’s efforts to make this process easier on their young son.
The nurses on the evening shift had thoughtfully arranged Cade’s room with plenty of space for him to play and move around. This extra care ensured that Cade had room to be himself, allowing him to forget, if only for a moment, the reason he was at the hospital.
Cade’s favorite toys, his beloved toy cars, were a major part of his day. As soon as he stepped into his hospital room, his eyes lit up at the sight of his toy cars scattered around the floor, just waiting for him to roll them across the smooth surface. His infectious energy filled the room as he scooted around, pushing his cars along the floor with all the joy a 2-year-old could muster.
His parents, Colton and Ashley, smiled as they watched him explore, feeling a sense of relief that their son was making the most of the situation. After all, no matter where Cade was, his love for his toys remained unwavering.
In between playing, Cade’s parents made sure to keep him entertained with one of his favorite movies—Cars 3—which was playing on their phone. It was a small but effective distraction, allowing him to relax as he sat on the bed with his parents, enjoying the familiar characters and vibrant scenes. The movie was one of Cade’s favorites, and as he watched Lightning McQueen and his friends race across the screen, it provided a comforting sense of normalcy in what could have otherwise been a stressful day.
Throughout the 24-hour EEG, Cade’s comfort was the top priority, and the night shift nurses did everything they could to make him feel at ease. Their kindness and attention to detail made a world of difference, ensuring that Cade was as relaxed as possible while undergoing the test. By the time the morning rolled around, Cade was already in high spirits, and he was quick to bond with the nurses who would care for him that day.
One of the nurses, Hailey Campbell, was especially attentive as she checked Cade’s vital signs on Thursday morning. Cade, typically cautious with new faces, quickly warmed to Nurse Hailey’s gentle demeanor. He seemed perfectly content, allowing her to check his vitals without any fuss, a sign that he was comfortable with his care team and trusting them to look after him.
His easygoing nature allowed the rest of the day to go smoothly, as he continued to play, watch Cars 3, and take breaks between activities. The EEG test, which might have been overwhelming for many children, became just another part of Cade’s day, thanks to the love and care provided by his parents and the hospital staff.
Cade’s twin brother, who was not at the hospital that day, remained a constant thought for him. The two brothers were inseparable, often seen playing together and sharing the same toys. While Cade loved to wear his Mario pajamas, a nod to his favorite video game character from Super Mario Bros., his brother preferred Luigi pajamas, the iconic green-clad brother.
This small but endearing difference highlighted just how close the twins were. They had their own unique personalities, but they also shared a bond that was special and irreplaceable.
As the day wore on, Cade continued to play, interact with his parents, and make the most of his hospital stay. His energy and joy were a testament to the resilience of children, even in the face of medical procedures. Colton and Ashley were both impressed by their son’s ability to remain upbeat and cheerful despite being in a hospital environment. Though they knew the EEG was an important step in understanding Cade’s health, they couldn’t help but be proud of how he had handled the entire experience.
Throughout the day, Colton and Ashley also reflected on how lucky they were to have a health team at Riley Hospital that prioritized their son’s comfort and well-being. They felt reassured by the level of care Cade was receiving, and they appreciated how the medical staff worked to create an atmosphere of normalcy, even within the confines of the hospital.
As parents, it was comforting to know that they weren’t alone in this journey; the team at Riley Hospital was just as invested in Cade’s happiness and healing as they were.
By the end of the day, Cade had passed the 24-hour EEG without any major difficulties, and his parents were grateful for the support and care they had received from the hospital staff. The experience, which could have been overwhelming for a young child, was turned into a day of fun and connection, thanks to the efforts of everyone involved.
That night, as Colton and Ashley sat by Cade’s side, watching him drift off to sleep, they reflected on how far their family had come. From the early days when Cade was first born and his health was uncertain, to this moment, where he was thriving and strong, they had faced every challenge with love, patience, and determination. Cade was an example of resilience, and they were grateful for the opportunity to be by his side every step of the way.
Cade’s story was just beginning, and though there would likely be many more medical tests and visits ahead, he had already shown that he was a fighter. With the love of his family and the unwavering support of his care team, Cade’s journey was sure to be one filled with strength, joy, and countless more moments of growth and discovery. And though he was only 2 years old, he had already proven that even the smallest of children could face challenges with bravery, joy, and a smile.Continue reading
