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István

  • 12 Years Old

  • Cerebral Palsy, Hearing Loss, Hip Dysplasia, Chronic Lung Disease & Global Developmental Delays

István had a traumatic beginning, being born a micro-preemie at 25 weeks gestation. Only weighing 1 lb, 6 oz, he fought hard to live. Being a micro-preemie comes with so many challenges – it seems like every decision a parent makes to ensure the baby’s survival comes with a set of lifelong effects. For instance, István contracted MRSA in the hospital (which required broad-spectrum antibiotics) and was on a ventilator for months. One or both of these life-saving measures is more than likely responsible for his unilateral hearing loss. István also has hip dysplasia and cerebral palsy, among other medical challenges.

“István’s blissful character proves that an extraordinary beginning does not determine your life’s path.”

Nonetheless, István does not allow any of his diagnoses to hinder who he is and who he wants to be. He is a very joyful and fun child, always finding a joke to make you laugh or spouting random history facts that remind you of your middle school history class that you probably loathed. In his free time, István dreams of being a history teacher with an RV, so he can enjoy random camping trips across the US. István is an avid reader – reading mostly history books about World War II, the American Revolution, and Ancient Rome. As a homeschooler, TV time is limited in their household. However, when István is offered time to watch television, he loves watching the History Channel, documentaries, and movies in black and white. István’s blissful character proves that an extraordinary beginning does not determine your life’s path.

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Photography by Nicole Bryant

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Madison

  •  12 Years Old

  • Autism, Dysarthria, Apraxia, SPD

At 24 weeks into my twin pregnancy, I was rushed to the hospital with bleeding and preterm labor. Doctors determined that Madison was showing signs of distress. The neonatologists provided me with stats on viability at 24 weeks and the medical complications that could arise should the twins come this early. Thankfully, I did not go into full labor and Madison’s heart rate returned to normal. However, I continued to experience contractions and the medical team could not determine the source of my bleeding. At the same time, Madison had been diagnosed with intrauterine growth restriction. I remained in the hospital hoping to get the twins to 33 weeks before delivering. 

When the twins were 27 weeks and five days old, and I had been in the hospital on total bedrest for 22 days, the nurses came running in to put me on oxygen. Madison’s heart rate was dropping and did not recover as quickly as they wanted. The doctors determined that for Madison to survive, we would have to deliver the twins via emergency c-section that day.  Madison weighed 1 pound 2 ounces and was only 10 1/2 inches long. She was placed on a ventilator immediately as she was not able to breath on her own. Her brother Joshua weighed 2 pounds 1 ounce, was 14 inches long, and required oxygen support as well.  While in the NICU, Madison received medication several times to close her patent ductus arteriosus (PDA), blood transfusions, and several rounds of antibiotics to fight off infections. She remained on the ventilator for five weeks and after a short course of steroids, she was able to breathe without support. After 75 days in the NICU, Madison came home. Both she and her brother were discharged on oxygen support, which continued for several months thereafter. Since their early arrival, we have seen more doctors, experts, and therapists than I can count. Madison has been diagnosed with Autism, Sensory Processing Disorder, Chronic Lung Disease, and Apraxia among other conditions.

“We often call her Goldilocks because she loves to try every bed in the house until she finds the one that is just right.”

Madison is 12-years old and attends The Link School—a private educational facility that focuses on hands-on learning. She thrives there and enjoys many typical childhood experiences such as pizza and ice cream. She is also an avid hoverboard enthusiast with a passion for Cat in the Hat and Boba Fett. She is a sweet, silly, pink-loving girl. We often call her Goldilocks because she loves to try every bed in the house until she finds the one that is just right. If you ask her what she is doing, she says, “I’m getting cozy.”

Madison survived her birth trauma because of her strength and determination. This little spitfire has defied the odds and she continues to work hard in all that she does. We are so blessed that God chose us to be Joshua and Madison’s parents. And we are grateful to Sunshine on a Raney Day for providing a Madison with a bedroom makeover.

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Photography by Birchfield Photography

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