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Tag: 2024

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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Liam

  • 16 Years Old

  • Duchenne Muscular Dystrophy

Liam is a funny and artistic 16-year-old living with Duchenne Muscular Dystrophy. DMD is a fatal, genetic disorder marked by progressive muscle loss due to missing exons within his DNA that produces a necessary protein. He began using a wheelchair for long distances when he was eight and lost the ability to stand and walk at 12. Showering and other activities of daily living are very difficult for him now.

A typical weekend will find him and his siblings in one game room at their stations off on an epic adventure together!”

He is an epic gamer. His gaming PC allows him to interact with friends and family, near and far, within a level virtual playing field. A typical weekend will find him and his siblings in one game room at their stations off on an epic adventure together! Liam also uses creativity to explore his thoughts and feelings. He will often say “Can I have my art stuff?” so he can draw while he watches his favorite YouTubers, Ten Hundred, Jazza, and Ace of Clay. He has multiple shelves holding dozens of sketchbooks.

One of the greatest challenges caused by DMD is that his bathroom is difficult to navigate. Liam used to love taking long, hot showers to relieve the stresses of his day and the ache in his weakened muscles. When he lost the ability to stand, he lost the ability to shower comfortably. What was once a joy has become painful, both physically and emotionally. Sunshine on a Ranney Day is looking forward to creating a space that will bring back some of that relief while showering, as well as tailoring it to Liam specifically!

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Photography by Kelley Wenzel

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Naji

  • 19 Years Old

  • T4 to L5 Spinal Injury

Naji is a nineteen-year-old young man, born on April 5, 2004 with a congenital heart defect that necessitated four open heart surgeries. His plans after high school were to pursue college degrees in both finance and law. Unfortunately, his plans were put on hold after sustaining a spinal cord injury in September 2022.

The injury Naji sustained in September 2022 caused him to become paraplegic. He was hospitalized for several months after his surgery for both recovery and extensive in-patient rehabilitation therapy. The nature of his injury by definition involves an extremely long recovery, including extensive physical and occupational therapy, lots of dedication and hard work to his treatment plan. Other hurdles he is having to navigate in addition to his paralysis are: the management of constant pain, neurogenic bowels, neurogenic bladder, emotional and psychological stress and anxiety.

“He is dedicated to … pursuing a career that would allow him to become a productive member of society – to give back what society has graciously given him.”

Naji is an extremely intelligent young man, as well as being very sensitive and caring. He has a unique sense of humor, loves animals and in fact has two dogs and a kitten: Oreo, Tango and Bear. He is dedicated to achieving recovery, going to college and pursuing a career that would allow him to become a productive member of society, and to give back what society has graciously given him.

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Photography by Niki Murphy

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Emery

  • 6 Years Old

  • Rubinstein-Taybi Syndrome, Agenesis of the Corpus Callosum, Chiari Type 1, Severe Photophobia & Tethered Spinal Cord

They call Emery their ray of sunshine. She radiates joy, is extremely determined and spunky, loves music, spinning, and is always up for an adventure. Her favorite outing is going to Home Depot and spending her time in the ceiling fan aisle which is one of her absolute favorite items since birth. A day with Emery is never boring. From her eclectic music taste ranging all the way from “Carry On My Wayward Son” by Kansas, The Piano Guys, to Wheels on the Bus, she will keep you on your toes and provide you with loads of laughter. 

“The way she sparks joy even in the toughest circumstances is one of the many things her family adores about her.”

Emery was born with Rubinstein-Taybi Syndrome, a rare genetic syndrome that affects every process and organ system in the body in different ways, Agenesis of the Corpus Callosum, which means the bridge between the right and left side of the brain is missing, chiari type one, a malformation of the skull that caused the brain to protrude down into the brain stem, severe photophobia, and a tethered spinal cord. All of these diagnoses branch off into more diagnoses that make her a very complex and rare little girl. Their day to day life is filled with medicines, therapies, appointments, medical trips to Cincinnati, and facing the unknown head on. But their days are also filled with deep abounding joy, laughs, family adventures, and fierce love. So many people tell them that Emery is so lucky to have them as parents but they always say that they are the lucky ones to be given such a gift as the privilege to love her.

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Photography by Donna Hagin

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