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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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Reid

  • 7 Years Old

  • Recessive Dystrophic Epidermolysis Bullosa

Reid is a somewhat shy seven-year-old boy who was born with Recessive Dystrophic Epidermolysis Bullosa; an extremely painful and debilitating genetic skin disease. At birth, Reid was missing large pieces of skin on his back, legs, hands and arms. Kids born with RDEB lack a critical protein that binds our layers of skin together like velcro. Without this protein, Collagen VII, Reid’s skin blisters and tears all over his body, mouth, esophagus, and eyes. What he and others with this severe form of the disease go through is beyond anyone’s comprehension. Reid endures extremely painful daily bandage changes. The severe wounds all over his body must be carefully cleaned and his mother must puncture any blisters to prevent them from spreading. Without the Collagen VII protein, blisters develop from the slightest friction (clothes seams, car seats, daily life) and can get larger because the velcro is not there to stop the spreading. 

“We are so pleased that Sunshine on a Ranney Day has offered to transform our bonus room into a dream bedroom for Reid.”

Despite living with this debilitating condition, Reid enjoys building with Lincoln Logs and riding his plasma bike. He also enjoys the company of his two older siblings, Avery and Barret. Although Reid has a feeding tube, he loves food! Even though eating can be painful, he enjoys small bites of cheese pizza and hotdogs when he doesn’t have any blisters in his mouth or throat. He is homeschooled and loves listening to Christian Hip Hop or watching The Spy Ninjas on YouTube.

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Photography by Pear Tree Photography

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Anthony Jr. & Lyric

  • 14 & 6 Years Old

  • Quad Cerebal Palsy, Epilepsy, Autism

Anthony Jr. was born on December 15, 2005. He has cerebral palsy and epilepsy caused by brain-damaged experienced during a complicated and difficult birth.  Anthony is non-verbal and wheelchair-dependent.  He is a vibrant child and loves his family.  Anthony enjoys music which is no surprise since he comes from a musical family.  

Despite all of Anthony Jr.’s challenges he can communicate and enjoys a good laugh.  He shows a love for life and what it means to fully live in the moment.  Anthony Jr.’s love for life also keeps his entire family going. 

“He is always the energy in the room that encourages others to be ok in moments of darkness.”

Lyric, younger brother to Anthony Jr., was born on December 11, 2015. Lyric was diagnosed with autism in 2017.  He is an extremely intelligent little boy and continues to amaze everyone with what he knows.  He enjoys music just like his older brother, Anthony Jr.  Lyric also enjoys being outdoors and interacting with people.  

Lyric faces challenges every day and he works really hard to do his best. He is always the energy in the room that encourages others to be ok in moments of darkness. He is such a loving little boy just like Anthony Jr.  Lyric tries his hardest to help his big brother.  He watches others take care of Anthony Jr. and attempts to mimic their actions. 

Lyric is truly what helps Anthony Jr. continue to smile! Lyric and Anthony Jr. represent brotherly love like no others!

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Photography by Vicki Alsup Photography

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Cyrus

  • 15 Years Old

  • Autism

Cyrus was born 15 weeks early and weighed 1 pound 10 ounces.  He spent his first year at Scottish Rite in the NICU with respiratory and gastrointestinal issues, retinopathy of prematurity, and a number of other complications and surgeries.  For the first eight months of Cyrus’ life, he was classified as failure to thrive but Cyrus had other plans.  When Cyrus was released from the hospital he came home with a trach and was on a ventilator 24/7, feeding tube, and diagnosed with cerebral palsy and severe developmental delay.

Cyrus has grown and thrived throughout his almost 7 years of life.  Cyrus is considered medically fragile, legally blind, and continues to battle retinopathy of prematurity.  He can walk independently using adaptive equipment.  He has completed kindergarten and works so hard undergoing multiple therapies; physical, occupational, vision, and speech. 

Cyrus does not place limitations on himself.  Cyrus was not supposed to live but he continues to defy expectations.  Cyrus is non-verbal but that does not stop him from expressing himself.  He is active and strong and is an expert countertop and furniture climber. 

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Photography by Pear Tree Photography

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Kennedy

  • 11 Years Old

  • Cerebal Palsy

Kennedy was born 7 weeks early and diagnosed at 1 with Cerebral Palsy. Kennedy is by far one of the happiest girls you will ever meet, especially considering the challenges that she faces; she has a smile that could light up the darkest of days.  She is remarkably determined and a very intelligent young lady, who happens to be “trapped” inside an uncooperative body.

Kennedy has had multiple surgeries to help with her physical issues in order to make her more comfortable. She has had eye surgery and an extra lung removed when she was a few months old. Her last surgeries were double hip surgery to restructure the hip joints that were in danger of falling out and not being able to be corrected. She was a trooper through this surgery! She then had all the hardware removed last year and has since made a full recovery with her hips.

Regardless of what she encounters, she always has a smile on her face.

She now is able to tolerate more weight and less painful movements where those are concerned. Kennedy scored above average on her school testing and will be going to middle school next year. There are many things that you and I take for granted that she is not able to do for herself…feed herself, use the restroom herself, or wash herself. These are just a few of the basic care needs that require assistance. 

She could let things like this get her down but she doesn’t. She is an amazing young lady! She wants to be an interior designer when she grows up. She loves watching HGTV, and Love IT or List IT is her favorite with Hometown being a close second. She has even come up with using her initials as the name of her business “KJH Interior Designs”.

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Photography by Vicki Alsup Photography

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Alex

  • 17 Years Old

  • Dystonic & Spastic Cerebral Palsy

If you watch a teen boy check himself out in the mirror before he heads out for the day, you may see him inspect carefully, fix details and then give a little nod to himself for a job well done. Alexander is no different. As a 16-year-old boy, he wants more than anything to take good care of himself. Like most teens, he loves music, dancing, and watching movies with his family. Alex lives with dystonic and spastic cerebral palsy. He uses a wheelchair to mobilize himself and a walker for exercise. Alex has intellectual and developmental disabilities, placing his cognitive and emotional maturity around age 10-12.

“An accessible bathroom will alleviate the fear of injury and help the family achieve their goal of facilitating as much independence as possible.”

Alex has grown into his adult body and his emerging maturity has him striving for independence when it comes to bathroom use and personal hygiene. Not only is Alex’s bathroom not conducive to his caring for himself; but, it also is not at all accessible for caregivers to assist. The toilet grab bar is jerry-rigged between the toilet and tub and often comes loose, posing one of many safety issues in his bathroom. A small wall sink was put in to allow the wheelchair to fit, but when Alex leans on it to reach for faucets, it is a great concern that it will pull off the wall.

Alex does not consider personal hygiene a chore; he is eager to take care of himself and takes great pride in his appearance and independence. An accessible bathroom will alleviate the fear of injury and help the family achieve their goal of facilitating as much independence as possible. Everyone looks forward to when Alex can look in his own mirror and give a little nod of self-approval for a job well done.

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Aidan & Brendan

  • 15 Years Old

  • Autism

Moms of boys remember the time when their little boy’s height surpassed their own. They mark a wall, the boy talks smack to mom, and they laugh as if it’s a right of passage. It is no different for 15-year-old twins Aidan and Brendan. At 6 feet and nearly 6 feet, they present the picture of grown men next to petite 5’3″ mom. Born at 28 weeks, the twins have differing degrees of Autism. Aidan is more moderate; with his developmental delays, he functions at an eight-year-old level. Brendan is non-verbal, and communication is challenging as he struggles to learn signs. Developmentally, he is in the 3 to 4-year-old range, and also has epilepsy.

“Born at 28 weeks, the twins have differing degrees of Autism.”

In addition to school and therapy, the boys enjoy traditional favorite past times. Aidan loves Pokemon, Toystory, and Minecraft. He loves learning about the weather; but, he finds great comfort in his favorite weighted blanket when thunderstorms roll around. Like so many teen boys, Brendan is a UGA fan, “Go Dawgs!” and loves to play golf. You can also find him enjoying the perennial favorites, Wheel of Fortune and Jeopardy, on evening TV. Both boys share in the excitement of Christmas as we all know Santa knows no age.

A dream bedroom makeover will maximize the space and make it comfortable for young men — Sunshine On A Ranney Day’s specialty.

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Eliavah

  • 8 Years Old

  • Open Heart Surgery, Misophonia

For most of us, the sound of a child’s breathing elicits a sense of tranquility and calm. For nine-year-old Eliavah, the sound of her sister breathing in her sleep is far worse than the proverbial fingernails on a chalkboard. Eliavah suffers from misophonia, which creates intense fight or flight responses and anxiety triggered by specific sounds many people don’t even notice. It is one of many diagnoses she has, including Tetralogy of Fallot, congenital heart abnormalities for which she had surgery at four months, hypotonia, which contributed to her pervasive developmental delays in both fine and gross motor skills and ADHD. Eliavah is not able to share a bedroom with her sister as the sound causes great anxiety and affects her sleep. Her day to day life is quite stressful as her body physically reacts to trigger noises, yet she keeps her positive attitude and love for learning.

Eliavah suffers from misophonia, which creates intense fight or flight responses and anxiety triggered by specific sounds many people don’t even notice.

Since she cannot share a room with her sister, Eliavah currently sleeps in her baby brother’s room, and he sleeps in their parent’s room. It is not easy for Eliavah to find a place in her home where she can unwind and safely escape the many stimuli of a typical family home.
Eliavah’s parents would love to turn their dining room into a bedroom for her. They imagine a place where Eliavah will have a sensory-friendly sanctuary of her own. Like most nine-year-old girls, she would love to listen to her favorite music ( David Bowie and Michael Jackson) in a bean bag chair surrounded by her stuffed animals, barbies, and crafts without stimuli that trigger negative responses. Eliavah’s heart has remained healthy, and she has such a passion and love for life. One day she hopes to be a Vet or maybe even be in a band with her best friend, her sister.

A new bedroom in the home would not only enable Eliavah to safely escape from the sensory overload of day to day life, but it will also allow her brother to move to his own room. Eliavah’s dedicated parents will have their bedroom to themselves – something most of us take for granted, and the peace of mind that Eliavah is safe and comfortable.

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Photography by Dinah Sutton Photography


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Rheagan

  • 8 Years Old

  • Spina Bifida

One often sees pinwheels on little girl’s bikes in parks and neighborhoods. Eight-year-old Rheagan has them on her wheelchair, which is perfect as its symbolism is “to turn one’s luck around.” While her pinwheels may bring joy, Rheagan’s bright, infectious personality brightens every place she goes. Born with Spina Bifida, she has bilateral clubbed feet, tibial torsion, and hip dislocation. After numerous surgeries on her legs, and although she has no movement below the knee, Rheagan is able to use her wheelchair to get around independently. She wears AFOs on both of her legs and can move from her wheelchair to other seats independently. In school, Rheagan excels at reading and science, and with her independence and strong will participates in gymnastics and WCMX at her local skatepark.

After numerous surgeries on her legs, and although she has no movement below the knee, Rheagan is able to use her wheelchair to get around independently

When Rheagan gets home, her independence ends. Without an accessible sink, she cannot wash her own hands, and someone has to bring a cup of water to her for teeth brushing. While most kids her age have mastered an independent shower, Rheagan must be lifted into the tub and requires assistance to be safe. Like most girls, Rheagan wants to choose what to wear, but cannot reach her closet as her room is not accessible in many ways.

As Rheagan approaches her “tween” years, it would be fabulous if she had a safe, accessible space of her own to enjoy her favorite Star Wars, Disney Descendants, and Pokémon interests. The wheelchair doesn’t hold Rheagan back, and after a Sunshine on a Ranney Day room makeover, nothing will. Pinwheels are the perfect decor for her wheelchair!

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Photography by Niki Murphy Photography

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Raynel

  • 16 Years Old

  • Spastic Quadriplegic Meningitis

This strikingly handsome young man may look familiar to many of our Sunshine on a Ranney Day followers as he was one of the children we worked with in our early years. Raynel received our twenty-third designer room makeover. At the time, he was only nine. He was delighted with his vibrant videogame themed room which was expanded to make room for his medical equipment and increase his ability to move around. Now, Raynel is nearing his sixteenth birthday and has become an incredible young man. Not only has Raynel grown quite a bit since his last makeover, but his family also had to move. His current room and bathroom are too narrow to meet his needs for transferring, showering and moving throughout the home. He is currently in need of a full adapted bathroom that will allow his chair to be rolled into the shower and decrease the physical strain of lifting him over the tub and supporting him during the bathing routine.

His current room and bathroom are too narrow to meet his needs for transferring, showering and moving throughout the home.

Raynel has Spastic Quadriplegic Meningitis which was contracted at the age of four. The effects of the infection led to many permanent disorders including obstructive hydrocephalus, cerebral palsy, a neurogenic bladder, developmental delay and hearing loss. He is fully dependent for all activities of daily living. Raynel has had a cochlear implant and is learning to use American Sign Language to communicate. His parents are learning ASL along with him so that they can continue to communicate with him as his language advances.

Sunshine on a Ranney Day is ecstatic over being able to see how much Raynel has grown and continue to support him as his needs change. He is truly extraordinary and continues to inspire us with his strength, positivity and illuminating smile. We are eager to complete these renovations and see him smile once again!

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Photography by Niki Murphy Photography

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