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Tag: Accessible Bathroom

Hudson

  • 6 Years Old

  • Gaucher Disease Type 2

Hudson is the youngest of 3 children, following his sister Olivia (8) and brother Gavin (10). He was born a happy healthy baby. Around 4 months of age, Hudson’s parents started noticing some differences in him, such as weight loss, difficulty nursing, and choking. After a few significant episodes Hudson was hospitalized around 6 months of age for further investigation. After a 16 day stay in the hospital and lots of testing Hudson was sent home with no answers and told to follow up with genetics. At the young age of 9 months old, on July 2nd, 2018, Hudson’s mom Nichole received the phone call that would forever alter the life their family had once dreamed of. Hudson was diagnosed with a rare, incurable, terminal, genetic disease, Gauchers Disease 2. They were told to put Hudson on hospice, that he would have no quality of life, never walk, talk, or live past the age of 2. Nichole’s response to them….. “but God”.

You’ve never had a hug ‘till you’ve had a Huddy hug!”

Hudson is now an amazing 5 year old who is living his BEST life! His family has and will continue to go to the ends of the earth for Hudson and his siblings. For the past 4 years they have made the drive to D.C. every 3 to 6 months for Hudson’s geneticist who is the only one in the US willing to give him a chance at life! In fact, Hudson is now being followed by geneticists all over the world as he is re-writing the books and making a way for all the children to come. 

Hudson is a very social kid, who thinks his siblings have hung the moon. He loves sports (football, basketball, and baseball), movies (Toy Story is his favorite), and has a smile that lights up his family’s world! He’s also known to give the BEST hugs. You’ve never had a hug ‘till you’ve had a Huddy hug! 

Unfortunately, Hudson is very susceptible to viruses that have kept him in the hospital ICU for more than half of his life. Because of this, they have had to keep Hudson confined within the walls of their home, limiting his exposure to the outside world. Sunshine on a Ranney Day is honored to bring light and joy into the walls that surround Hudson to help him continue living his BEST life!

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Photography by Vicki Alsup Photography

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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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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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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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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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Amanda, Caleb & Isaac

  • 19, 10 & 10 Years Old

  • Amanda: Spina Bifida

    Caleb: Autism, congenital CMV, hearing & vision loss, sensory issues

    Isaac: Pallister Killian Syndrome 

Amanda, Caleb & Isaac come from a family of eight! Sunshine on a Ranney Day’s plans to create an accessible bathroom and therapy room for them will impact all three in different and wonderful ways.

Amanda is 19 years old and was born in China. She was born with spina bifida which causes her to be paralyzed from the waist down. She has been with her family since she was 13 years old and is such a joy! She uses a wheelchair and other medical equipment and has had many major surgeries since she’s been home. Amanda loves reading, anime, art and is very talented with drawing. She is also very excited to start her first job soon. A handicap accessible bathroom will be such a blessing to her!

Sunshine on a Ranney Day’s plans to create an accessible bathroom and therapy room for them will impact all three in different and wonderful ways.

Caleb is 10 years old and was born with congenital CMV and calcifications on his brain. He was adopted at 4 weeks old and he is such a cutie pie. He has severe autism and loves to quote books, movies and especially nursery rhymes. Singing, swinging and swimming are his very favorite activities. Everyone who meets Caleb falls in love with him. He is funny, sweet and silly. He will enjoy a new playroom/therapy room so very much.

Isaac is 10 and was born with Pallister Killian Syndrome which is a rare genetic disorder that affects the 12th chromosome. He was adopted at 5 months old when he was discharged from the NICU. He is blind, deaf and intellectually he is still their baby. He is an absolute JOY to his family. Isaac’s smile can melt a heart of stone! His laughter echoes through their home reminding his family that there is joy all around us if we just open the eyes of our hearts to see it! He loves swinging, lights, vibrating toys, and being held and tickled. He also utilizes a wheelchair and because of his size, an accessible shower is going to be the most amazing gift to him and to his parents. He will also love and enjoy the new therapy room! 

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Photography by Shana Darnell

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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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Damon (DJ)

  • 11 Years Old

  • Spina Bifida & Hydrocephalus

“At 24 weeks gestation my life changed forever. I was told that my baby had spina bifida and that his life would be tumultuous at best. It was suggested that I terminate my pregnancy as it was predicted that his quality of life would be very low. I then sought the opinion of some amazing doctors at Children’s Healthcare of Atlanta who told me that the information I was provided would not be DJ’s story.  

DJ was born at 32 weeks and this amazing young man has not stopped making an impact in my life and the life of others. Not only did he have spina bifida, but he was also diagnosed with hydrocephalus. He struggled through some developmental delays as he did not start walking until 2 years old; BUT HE STARTED WALKING!!! A prior specialist stated he would never walk, but GOD had other plans.

“He may not run as fast or jump as high as other kids, but this kid has never stopped trying and would challenge you every chance he gets.”

He continues to be a scholar maintaining honor roll since pre-K.  He may not run as fast or jump as high as other kids, but this kid has never stopped trying and would challenge you every chance he gets. Like most kids his age he is an avid gamer with his favorite video game being Super Smash Brothers.  He is a sports fanatic who supports all of his home teams: The Falcons, The Hawks, The Braves, and Atlanta United. He is currently a member of an awesome team, The Gwinnett Heat where he plays wheelchair handball, basketball, and football.  Besides collecting all of the Nintendo Amiibo ever made, his life goals are ever evolving. I am so proud of the young man that he has become and I’m excited to see what more GOD has planned for him in the future.” – Rashida, Damon’s mom

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Photography by Niki Murphy

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Logan

  • 13 Years Old

  • Transverse Myelitis, paraplegia and autonomic dysreflexia

Logan is an active 13 year old that does not let his wheelchair or crutches cramp his style. He loves to be independent and show the world he can! Most of the time he is in his wheelchair, but uses crutches periodically to get up and down steps or to transfer. Logan acquired transverse myelitis in his spine at 5 months of age, which left him with incomplete paraplegia.

He is an athlete! He excels at everything he tries. He has been on a competition swim team, Challenger baseball (where his picture is hanging in the Little League Baseball Hall of Fame in Williamsport, PA), and currently plays on the Jr. Hawks prep basketball team with Blaze Sports. He loves his coaches and teammates and plans on hopefully getting a college scholarship in the future.

Logan is an active 13 year old that does not let his wheelchair or crutches cramp his style.”

Logan’s other interests include the guitar, books, e-sports, content creating on social media platforms and chorus in school. He also thinks he’s funny – he will tell you jokes 24/7 if you let him. Some are funny, some are dumb dad jokes, but he always thinks he’s a pro. He will tell you that when he grows up, his parent’s want him to go to college and maybe become a computer programmer or something in that field, but he wants to become a “sit down comedian.” Sunshine on a Ranney Day can’t wait to give spunky Logan an accessible dream bedroom and bathroom!

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Photography by Your Agent Catelyn

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Peyton

  • 7 Years Old

  • Cerebral Palsy, Hydrocephalus, Epilepsy

In 2015, Crystal gave birth to twins Peyton and Taylor at 26 weeks. Both only weighed a little over a pound a piece! Taylor had a brain bleed and Peyton suffered bilateral brain bleeds grade 3 and 4. After both came down with hydrocephalus, the girls got a VP shunt to help drain extra cerebrospinal fluid from the brain. All of this resulted in 3 months in the NICU! For the first year of their lives afterward, all seemed normal until they noticed Peyton was ignoring her right hand. They soon began early interventions and before long Peyton was diagnosed with cerebral palsy, affecting the right side of her body. She worked super hard in therapies and was able to take her first steps at 3 years old! Since then, Peyton began having seizures and now has the diagnosis of focal epilepsy as well.

Despite everything she has gone through, she is the sweetest, happiest girl!

Despite everything she has gone through, she is the sweetest, happiest girl! In June of 2022 she underwent a surgery called selective dorsal rhizotomy at Children’s Healthcare of Atlanta. This surgery was intended to relieve some of her symptoms of cerebral palsy and hopefully help her stay mobile and gain more skills. Peyton spent 30 days in the rehab facility at the hospital, working through intensive physical therapy. Even though this surgery requires a lot out of Peyton for the first year post-op, she has stayed so joyful and determined! Her hard work of relearning how to walk again paid off when she took her first independent steps again a week before Halloween. She attends intensive physical therapy 5 days a week and is making great strides towards a full recovery! She is truly my hero,” – Peyton’s mom, Crystal.

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Photography by Carrie Birchfield

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