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Tag: In Progress

Desmond

  • 7 Years Old

  • Spina Bifida, Hydrocephalus, Club Foot, Bowel and Bladder Complications

Desmond has spina bifida, hydrocephalus and autism, but in no way do these diagnoses define him or limit his joy! His parents say is a social and caring person, always looking to greet anyone he meets in passing by shaking hands or giving a hug. Not only is he caring, but he is also fiercely independent and determined to do more things on his own; he knows what he wants! Because of this, he has always been structured in time scheduling and organization since birth. On any given day, you can find Desmond doing art, baking, cooking, out in nature, playing the piano or listening to music. He has such an imagination and loves being silly! Among his goals in life, he wants to be a veterinarian or as he calls it, a ‘pet doctor.’

“He has such an imagination and loves being silly!”

The makeover Desmond will be receiving will ensure that the space not only works for him now, but will continue to accommodate his needs for many years to come. Because of his diagnoses, he has no feeling below his knees. This requires him to use AFO braces. Getting into a bathtub or getting on hard flooring from his wheelchair is very careful work. Though he is independent and mobile with his wheelchair, they have to keep an eye on him as he can lose focus and be distracted in public settings due to his autism. Sunshine on a Ranney Day hopes to create a space for Desmond to feel safe and contained in his own bedroom, as well as a bathroom that gives space for increased independence and comfort.

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Photography by Carmen Mari

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Nicolas & Maddox

  • 8 Years Old

  • Metachromatic Leukodystrophy

Meet Nico and Maddox! In September of 2022, both boys were diagnosed with Metachromatic Leukodystrophy (MLD), a genetic disease that affects the brain and nervous system. Those with the disease progressively lose function as the substance that protects the nerve cells (Myelin) becomes damaged. The result is a loss of motor and cognitive function over time. There is no cure, and no treatment options are available at this stage of their disease.  

Nico (8) is a bundle of curiosity and creativity. From the moment he said his first words, dinosaurs became his world. His playroom is a prehistoric playground adorned with dinosaur toys, including his favorite T-Rex. It’s common to find him engrossed in dinosaur books or correcting his parents on the difference between a Brachiosaurus and a Brontosaurus. Beyond his fascination with dinosaurs, Nico possesses a remarkable intellect and vivid imagination that sets him apart. His inquisitive nature has led him to develop a keen interest in puzzles. He often thrived on the mental stimulation that solving puzzles provides. 

“One of the family’s favorite pastimes is following the path through their garden to look at all the vegetables and flowers planted along the way.”

Maddox (6) is a bundle of joy who can turn any moment into a celebration with his infectious laughter. His zest for life is evident in everything he does, and his laughter fills the air with happiness. He possesses an innate ability to lighten up a room, bringing smiles to the faces of those around him. His playful spirit and genuine enthusiasm for life make him a magnetic presence, drawing people in with the promise of shared laughter and joy. Music holds a special place in Maddox’s heart, and he expresses his love for life through the power of song. His repertoire includes the timeless classics “Happy Birthday” and the festive “Jingle Bells.” His unwavering enthusiasm turns any sing-along into a heartwarming performance that leaves everyone smiling.

One of the family’s favorite pastimes is following the path through their garden to look at all of the vegetables and flowers planted along the way. This is a perfect reflection of the family’s love for life and being together!  Sunshine on a Ranney Day’s goal is to make them as comfortable as possible as symptoms begin to limit the boys’ abilities. We hope to help the family make the most of their time with the boys by improving the accessible areas of the home to accommodate the boys’ needs.

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Photography by Kelly Larkin

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Marie & Alondra

  • 17 Years Old

  • Diastrophic Dysplasia & Scoliosis

Marie is a determined, funny 17 yr old with a spinal cord injury. This self-proclaimed night owl loves to dance, cuddle with her orange eyed cat and plays on many wheelchair sports teams, including basketball for Blaze sports and wheelchair tennis. Marie has been active in the Atlanta disability community since the age of 2. Marie has served as a mentor to other disabled children at Georgia disability camps, volunteers at the local children’s hospital and works in a pediatrician’s office part-time. She is currently studying children’s healthcare in college. This rising high school senior excels in math, language arts and science. Marie is a fabulous athlete. She plays basketball for Blaze sports all girls/women team and wheelchair tennis. 

When Marie graduates high school in late 2024, she hopes to move into a duplex her mother purchased nearby. Michele, Marie’s mom, will be renting out the other side of the duplex to Alondra and her family. This means that Marie can live independently, while also having the security of others closeby. The venture will tremendously help her gain the necessary independence that all young adults long for. Without the remodel, Marie cannot reach the next milestone in her life: learning how to live on her own with just a little help. The duplex needs improvements to make it accessible for both of the girls’ independent living, and that is where Sunshine on a Ranney Day comes in! Both sides of the duplex will receive renovations that will make it possible for both girls to grow towards independence in their daily activities.

“Marie & Alondra will be neighbors; living in the same duplex and equally working towards more independent living.”

In her current living situation, Alondra has to be carried through the home by her parents because the hallways aren’t wide enough for her wheelchair. This keeps her from being independent, but with an accessible space she can do most things on her own. For seven years, Alondra has lived in a home inaccessible to her needs. She has had many back surgeries and is in physical therapy to learn how to manage life in a power wheelchair. She plans on living with her parents for many years to come, so a home that is accessible to her will be life-changing. Alondra is applying to a technical school to be a medical assistant. Her favorite color is burgundy, and she loves lively Spanish music.

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Photography by Marcelino Aguilar

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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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