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Tag: Accessible Bathroom

Summer

  • 9 Years Old

  • HIE, CP, Seizures, Swallowing Disfunction, Cortical Visual Impairment, Startle Reflex, Non-Verbal

Little Summer was born by emergency c-section after being extremely low on oxygen for 40 mins. She came out completely blue from not being able to breathe and was immediately  transferred to Emory NICU for cooling therapy. Her mom was told over the phone that Summer was having her body temperature cooled to try and minimize the hits to her organs from the lack of oxygen, called Hypoxic Ischemic Encephalopathy. Summer was cleared to leave after 10 days, proof that she had major brain damage. 

It took 18 months for the doctors to catch that the milestones weren’t happening. She couldn’t sit up, had poor head control, no control of limbs or saliva, a swallowing dysfunction, epilepsy, and mixed cerebral palsy. Her muscle tone is tight and painful in some parts of her body and low tone in other areas. Summer’s main caretaker is her single mother, Shanon. Taking care of her is a struggle 24/7, now that she is getting heavier. Shanon has injured her back and neck lifting, bathing, diapering and feeding her. They are in desperate need of their home to be set up to make their lives less demanding physically and mentally. Shanon worries that after 10 years of living this way, it will only get harder and more taxing on her body and therefore Summer, as a result. 

“Summer enjoys going shopping with her mom and being with her dog Sterling.”

Summer enjoys watching children play outside, play video games, and creating art. Like many girls, pink is her color. She enjoys going shopping with her mom and being with her dog Sterling. She also loves the library and watching Spirit on Netflix – horses are her favorite animal! Sunshine on a Ranney Day is looking forward to giving Summer an accessible bathroom that is safer for both her and her mom, as well as a dream bedroom that reflects her beautiful soul!

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Photography by Rosalind Williams

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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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Hannah

  • 17 Years Old

  • Cerebral palsy, epilepsy, KCNQ2, Lennox-Gastaut Syndrome, non-verbal

Hannah’s story begins with prayer. Her name was chosen by her mother, who prayed for a little girl. Inspired by the Biblical story of Hannah, whose words were “For this child I prayed,” her mother’s prayers were answered. Hannah’s name means “God’s favor” or “God’s grace,” which is especially fitting, as her middle name is also Grace. Her family lovingly refers to her as “Grace Grace,” because she is doubly blessed with God’s grace.

Some people would define Hannah by her numerous diagnoses such as Cerebral Palsy, Epilepsy, Dysautonomia, CVI, and G-Tube dependant. We choose to define Hannah differently. She is a ray of sunshine and has a spirit that has been described as “sweet as honey.” Hannah is almost always happy. She has a smile that lights up her whole face and a laugh that is contagious. Hannah is also a little bit of a diva. The sign on their van says “Diva on wheels” which describes her perfectly. She arrives places with her sunglasses on and is ready to hold court with her numerous fans. Everywhere they go, people are drawn to Hannah and want to come talk to her. Every time they go to church, people young and old come and talk to Hannah and try to get her to smile. Her family jokes that they are just her entourage. Her teacher says that every time they go on community skills, at least one person knows Hannah by name. During her special needs tap dance recitals, Hannah will plant her feet in the gait trainer and refuse to move until the audience gives her class a standing ovation.

Some people would define Hannah by her numerous diagnoses such as Cerebral Palsy, Epilepsy, Dysautonomia, CVI, and G-Tube dependant. We choose to define Hannah differently.”

Hannah is very social and is happiest when she is out and about. She loves to go to church, school, dance class, therapy, shopping and to entertainment venues like Stone Mountain and the Georgia Aquarium. She absolutely adores beluga whales and will happily sit and watch them for hours at the aquarium. Hannah loves music. She will “sing” along to everything from praise and worship music to Broadway to Taylor Swift and Justin Bieber. Hannah is quite the girlie girl and loves things that sparkle and shine. She loves lights, especially multicolored lights that flash. As you can see, Hannah is so much more than a girl with special needs. She is a living testimony of God’s grace.

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Photography by Niki Murphy

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Matthew

  • 15 Years Old

  • Spinal Muscular Atrophy

Matthew embodies resilience and determination in navigating life with his unique needs. His family’s recent move to a single-story home reflects their commitment to providing him with a supportive environment as he grows older. However, challenges continue, particularly in accessing his bedroom and bathroom, located at the end of a narrow hallway with tight turns. Despite his skills at maneuvering his power chair, the limited space and narrow doorways limit his independence. 

Sunshine on a Ranney Day plans to transform Matthew’s bedroom and bathroom into functional areas that not only alleviate the burden on his parents but also enhance his ability to navigate independently. This initiative holds the promise of significantly improving Matthew’s daily life, creating a greater sense of autonomy and comfort within his home.

Matthew embodies resilience and determination in navigating life with his unique needs.”

Outside of his home life, Matthew shines as the team captain of his power soccer team – a testament to his leadership and passion for sports. His relationship with his dad, marked by friendly competition in races and marathons over the years, highlights their support for each other. In quieter moments, Matthew can be found playing video games and shares his musical talents as a member of the school choir. Matthew’s journey is one of strength, perseverance, and the unwavering support of his loving family and community. Sunshine on a Ranney Day is honored to be a part of Matthew’s journey!

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Photography by Niki Murphy

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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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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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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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