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Tag: 2024

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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Glenn

  • 14 Years Old

  • Cerebral Palsy, seizure disorder, oropharyngeal dysphagia, spastic quadriplegia and developmental delay

Glenn was born a twin at 38 weeks. However, his identical twin passed during the pregnancy at the 16th week. Several ultrasounds during the pregnancy showed that his head was not growing, and later it was discovered that Glenn would be born with microcephaly. In addition to the microcephaly diagnosis, he was diagnosed with cerebral palsy at birth. As an infant, Glenn had high anxiety and needed to be held. At 10 months, Glenn began having challenges swallowing food. After a swallow study was completed, he was diagnosed with failure to thrive which led to his first surgery and a g-tube placement. When Glenn was two, his mom began to often notice that his body jerked abruptly while he slept and that he startled easily at sudden noises. An EEG and a sleep study was completed and he was diagnosed with seizure disorder. Over time he has had a hip surgery and a spinal fusion surgery to correct the scoliosis diagnosis. Glenn has been very strong and resilient throughout all that he has had to endure and has come out of every surgery with a smile. 

“Glenn has been very strong and resilient throughout all that he has had to endure and has come out of every surgery with a smile.

Due to the effects of the cerebral palsy and the severe spasticity, Glenn has never used his hands, nor has he ever or walked. He continues to suffer from multiple seizures daily. He requires total care, as he is dependent on his family for all his needs. Glenn is a happy young man and is a social butterfly who is a big fan of music. He enjoys attention from anyone who will give it to him, and he loves for people to talk to him! He tries hard to talk and sing, and occasionally you can understand some of his words and phrases. He enjoys observing people and waiting for them to do or say something silly so that he can laugh. When Glenn finds something funny, he will laugh and snort to no end. He wakes up smiling every morning ready to play. He understands everything and knows what he likes and dislikes. He is not bashful at showing the world who he truly is!

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Photography by Niki Murphy

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Adam

  • 22 Years Old

  • Cerebral Palsy, Hydrocephalus & mild intellectual disability

Adam is a young adult who has defied the odds and turned his challenges into triumphs. Born with Hydrocephalus and cerebral palsy, Adam has never let his wheelchair-bound condition define him. Instead, he has embraced life with an unyielding spirit and an infectious zest.

His exceptional social skills and his innate ability to uplift everyone around him make him a cherished presence.

Bilingual and highly active, Adam’s accomplishments are as diverse as they are impressive. He is a skilled horseback rider, a tennis player, a swimmer, and even a scuba diver. His determination and discipline have also earned him a green belt in martial arts. Adam’s academic journey is equally inspiring. He attended the IDEAL program at Georgia State University, where he successfully earned his degree. Today, he continues to contribute to the university community through his work at the Center for Leadership and Disabilities. 

Born a twin, Adam’s radiant personality shines as brightly as the sun he loves so much. His exceptional social skills and his innate ability to uplift everyone around him make him a cherished presence. Adam is truly a blessing to those who know him, and his loved ones eagerly anticipate his continued success and the achievement of his goals.

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Photography by Jacey Verhoef

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Marilyn

  • 20 Years Old

  • Morquio syndrome

Marilyn is a smart, beautiful, and outgoing 20-year-old girl who loves BTS, shopping, boba, makeup and hanging out with friends and family!

She was born with Mucopolysaccharidosis (MPS) IV, a rare disease in which the body is missing or does not have enough of an enzyme needed to break down long chains of sugar molecules. Because of MPS she is unable to walk or grow and uses an electric wheelchair. Marilyn wears glasses and hearing aids and has had multiple surgeries to help with her health and mobility.

“This room makeover will bring her so much happiness and give her the independence of not needing help from her parents and siblings.”

In her current room situation, her wheelchair is not able to be brought into the house. She would love to have her wheelchair inside the house so that she is not limited to just being in her room. This room makeover will bring her so much happiness and give her the independence of not needing help from her parents and siblings. Sunshine on a Ranney Day is beyond thrilled to be able to offer wheelchair access into her home and a bedroom of her dreams!

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Photography by Carmen Mari

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