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Tag: Wheelchair Ramp

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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Oakley

  • 9 Years Old

  • Spina Bifida & Hydrocephalus

Oakley was born in China in March of 2014. She was found in a baby box, and taken to the orphanage. Oakley has Spina bifida, and this is likely the reason her biological parents were unable to care for her as best as she needed. Her medical file looked really complex and scary, but the moment her family saw her picture, none of it mattered, whatever it looked like. They began the process to adopt Oakley when she was about a year and a half old, and finalized the process just before she turned two. 

Because of her Spina bifida, Oakley is paralyzed mid thigh down. She was also born with hydrocephalus and tethered cord syndrome that required surgery on her spine. Oakley uses a wheelchair but when she is at home, she likes to be out of her chair more than when she is at other places, so she will scoot around using her arms. She has some seriously strong arms! She can show you how to do a pull up or two under the table! And there is really nothing she can’t figure out a way to make work where she needs to. 

Oakley is the happiest, most joyful, hilarious child you will ever meet. She has no cognitive delays, and her sense of humor is on point. She is sharp. So smart. Her family likes to say she is 8 going on 22. She seriously runs the ship. She keeps everyone in the house in order, and I am pretty sure she does the same at school. She is a social butterfly, and every kid loves her. You would never know in her tiny little life that she had ever dealt with anything. She’s the one who reminds her family to be grateful, to not forget what they have, and to find the joy even where it seems it shouldn’t be. 

“You would never know in her tiny little life that she had ever dealt with anything.”

For her, a wheelchair accessible bathroom or a ramp will mean the world. Currently, they carry her in and out of the house to and from the van when they leave and come home. A new bathroom ahead of beginning her new bowel management process will be such a sweet step towards making her more independent and giving her somewhere private that she would actually enjoy being in during this process every night. She is also starting to get heavier as she is getting older, so this makeover will make the bathroom process much easier for her family, as well. But she finds such joy in such little things, this would truly make her world. She longs to be independent, but never complains about not feeling completely so. She is truly sunshine on a rainy day. She radiates joy like no other child. Her laughter is infectious. Her knock knock jokes are no joke. They’re the real deal. She is peace, and love. The no nonsense, no fuss attitude she has is contagious, and it changes everybody else’s environment. Her family is so much better because she is here.

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Photography by Hales Photo

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Ethan

  • 17 Years Old

  • Mecp2 Duplication Syndrome

Ethan spent the first seven years of his life without an official diagnosis other than a general diagnosis of mentally disabled.  That changed when Ethan was seven and experienced a seizure where he ultimately ended up at Children’s Healthcare of Atlanta (CHOA).  Fortunately for Ethan, the neurologist at CHOA specialized in what would eventually become Ethan’s diagnosis, Mecp2 Duplication Syndrome or M2DS.  M2DS is a rare genetic condition causing many issues such as severe intellectual disabilities, impaired motor function, spasticity, speech, gastrointestinal, and respiratory issues.

Ethan is able to enjoy life in general; he is still mobile and eats soft foods by mouth.  He has had setbacks over the years but he continuously proves how strong he is time and time again.  Ethan’s mobility has declined over the past few years due to severe seizures.  Ethan’s Sunshine makeover includes a wheelchair-accessible bathroom and wheelchair ramp going into his house to make daily life a little easier for everyone.

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Photography by Marcelino Aguilar Photography

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Arion

  • 11 Years Old

  • Cerebral Palsy, Visually Impaired

Like most pre-teens, 11-year old Arion seems to grow like a weed despite his many disabilities. As he has grown, it has become more difficult for his parents and caregivers to move him and care for his needs. There is a step up from the entry door of his home, making it difficult for wheelchair entry, and his bathroom is not accessible.
Arion was only 1.6 pounds when he was born prematurely. In addition to living with Cerebral Palsy, he has ROP, Retinopathy of prematurity, causing visual impairment. Another complication of his premature birth is Necrotizing Enterocolitis (NEC), a disease that affects the intestine of premature infants, sometimes called Short Bowel Syndrome.

In addition to living with Cerebral Palsy, he has ROP, Retinopathy of prematurity, causing visual impairment.

Like many families with pre-teens, Arion’s family is always “running around,” but instead of sports and scouts, his days include frequent visits to a GI Doctor, a lung doctor, a psychiatrist, an eye doctor, speech therapy, OT, PT, and Hippo Therapy. He also goes to school four days a week and receives some homebound services. When returning home, from a busy day, they are challenged with safely getting Arion up the step and into their home. Things are complicated, even further, when it is time to transfer Arion to a bath. The chair doesn’t fit through the bathroom door. Arion has grown to a size that makes transferring to their small tub dangerous for both him and his mom.

Arion loves music, and when someone sings to him, as well as cars and toys that make noise and music. A modified entry and an accessible bathroom will make for a safer home. It will reduce the risk of injury and eliminate physical stress on his parents and caregivers. With a better quality of life for the whole family there will be more time to sing and enjoy music with Arion.

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Photography by Nicole Photography

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Christian V

  • 16 Years Old

  • Cerebral Palsy

This handsome fellow is the next recipient of a dream makeover from Sunshine on a Ranney Day. Christian is a gregarious 16-year old boy with Cerebral Palsy who dreams of being a DJ when he grows up. Just hours after having his wisdom teeth removed, Christian was on the air at the Ryan Seacrest Studio at CHOA Egleston, interviewing children awaiting surgery. Smart and witty, he charmed his guests with unexpected bits of well-placed humor. Christian is social, craves engagement and loves lifting others up. His middle school football coach saw a spark in him and invited him to join the team as an inspirational sideline coach. Christian’s positive attitude was contagious and earned him the coveted Heart of the Lion award given for courage in the face of stiff odds. By Christian’s eighth-grade year, the coach renamed the award after its inspirational recipient. Christian will return each fall to hand out the honor to a deserving athlete and make a speech during the football banquet. 

Christian is a gregarious 16-year old boy with Cerebral Palsy who dreams of being a DJ when he grows up.

Christian was born prematurely by emergency c-section and spent 32-days in the NICU. Eight months later, after failing to meet developmental milestones, he was diagnosed with Cerebral Palsy. At three years old, he received his first wheelchair, entered pre-school and learned to speak. This is when his personality began to emerge. He has continued to thrive and grow despite his disability, which he says he doesn’t notice all that much. Now that he is 5 foot 2 and one hundred pounds, with a 250-pound wheelchair, caring for him in a traditional sized bathroom and narrow bedroom doors has become a difficult challenge. With a bathroom remodel and ramp installation, Sunshine on a Ranney Day hopes to keep his dream alive and help him achieve his goals while helping his family continue to care for him in his home. We hope that you will join us in making this project become a reality.

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Photography by Kristy Weaver Photography

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