Meet the Kids Archives - Page 9 of 11 - Sunshine on a Ranney Day

Bennett & Lacey

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

18 and 6 Years Old
Joubert’s Syndrome

Bennett and Lacey were born into a world of beeping monitors, probes, tubes, lots of hands – checking vitals, performing tests, surgeries and therapists skillfully manipulating their movements in hopes of training their bodies to follow suit. Bennett was born on January 27, 2000 after a relatively uneventful pregnancy. His parents, Hillary & Jeff, were extremely excited to welcome their first child into the world. However, almost immediately they knew something wasn’t “right”. Bennett’s movements were sluggish. He didn’t cry nor open his eyes; and, had significant issues breathing and keeping his oxygen intake at an acceptable level. After three weeks in the neonatal intensive care unit, a geneticist finally shared the diagnosis – a very rare genetic disorder called Joubert Syndrome. Bennett’s parents were told their new baby was, at that time, one of about 200 people in the world with this diagnosis. Joubert Syndrome is a neurogenetic disorder characterized by low muscle tone, impaired coordination, developmental disability, abnormal breathing pattern, abnormal eye movements, and a distinctive brain malformation. Jeff & Hillary were told that Bennett would most likely not survive infancy and that any future pregnancies had a 1 in 4 chance of the child also being born with Joubert Syndrome. Armed with this devastating news, Hillary & Jeff took their baby boy home; determined to give him the best possible chance to prove the doctors wrong. The first few months of Bennett’s life were literally focused on keeping him alive. His parents would take turns at night, one sleeping and the other staying up making sure that Bennett was breathing.

Joubert Syndrome is a neurogenetic disorder characterized by low muscle tone, impaired coordination, developmental disability, abnormal breathing pattern, abnormal eye movements, and a distinctive brain malformation.

As time passed, Bennett did grow stronger, both physically and mentally despite daily challenges and numerous surgeries and set- backs. His incredible personality began to develop as well. From early on he was loving, caring, happy and brightened whatever room he was in. Lacey was born on January 18, 2013, almost thirteen years after Bennett. Fortunately, her stay in the NICU was only a week. Lacey, also diagnosed with Joubert Syndrome, has faced many of the same struggles as Bennett including a fragile infancy full of sleepless nights; but, generally her health has been better than his was to this point. She still has similar physical challenges – requiring assistance with daily activities including walking. Unlike Bennett, she is non-verbal, causing deep frustration for her. Bennett is now 19, a rising Senior at Roswell High School. He loves to be the life of the party! Bennett is extremely active in North Fulton Young Life, sings the National Anthem at Special Olympics annually, loves music and is working towards becoming a playwright. Lacey is 6 years old and a rising First Grader at Mimosa Elementary. She is creative with an innate sense of humor. She has developed a love for entertainment, has watched “The Greatest Showman” so many times that practically the entire family knows all the lines. She gets around her iPad like a pro, making her own movies, playing music and even FaceTiming friends (without her parents’ knowledge!) Lacey especially loves dance. It’s a part of her. She is a student at Atlanta Dance Central and excels in their adaptive dance program. Sunshine on a Ranney Day is excited to build an In-Home Therapy Room for Bennett & Lacey! On average, this family attends 7 therapy sessions and 2 doctors’ appointments each week. Our hope is that through access to a therapy room in their home, Bennett and Lacey will continue to grow stronger and accomplish more each day!

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Photography by Nicole Photography

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Christian B

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

17 Years Old
Lennox-Gastaut Syndrome

This dapper seventeen-year old young man with an ear to ear smile is Christian. His infectious grin can melt your heart and comfort your soul. He touches the hearts of everyone he meets and inspires others to make a difference. Christian is seventeen years old and attends Dacula High School. He lives with his Mom, Dad and two younger sisters (Cathryn 15 and Ashlyn 13). Christian was born healthy and developed as an infant should, meeting milestones as expected. He was a quiet little guy and didn’t have much to say in terms of babbling or words as he was approaching two years old. He was a late walker, as he started walking around 18 months. That was also about when he started having frequent involuntary breath holding spells. His lips and fingers went blue and he would go limp for 30 seconds or so. This was incredibly concerning and it was happening involuntarily. Christian began having grand mal seizures, drop seizures and breath holding spells on a daily basis. It was a challenge to get these seizures under control, as well as obtaining a true diagnosis. He and his family spent most of their time with neurologists or in the hospital. They were desperately looking for answers and sought the help of a geneticist. Christian was in status epilepticus meaning that his seizures were constant and wouldn’t stop. Doctors had to put Christian in a drug induced coma and he was in the PICU for almost 2 weeks. He was only 3 years old. He was in the hospital for a month and they still needed a way to manage his seizures. They tried multiple medications and a Ketogenic diet. Neither worked. He also had reflux and difficulty swallowing, so it was decided that he needed a G-Tube and a Fundoplication to help with the reflux.

Christian began having grand mal seizures, drop seizures and breath holding spells on a daily basis. It was a challenge to get these seizures under control, as well as obtaining a true diagnosis.

Christian was also diagnosed with Spastic Cerebral Palsy due to his disordered muscle tone and contractures. He endured another significant episode of epilepticus and was hospitalized in November 2013. He spent Thanksgiving in the hospital and wasn’t released until Christmas. After that, he was assessed by a new neurologist, who diagnosed him with Lennox-Gastaut Syndrome (LGS). LGS is a severe form of epilepsy that typically becomes apparent during infancy or early childhood and is most often diagnosed between 3-5 years of age although it took longer to determine that this was another syndrome Christian had. Since then Christian has been on a regimen of six medications and daily supplements which have minimized his seizures. He is essentially nonverbal, but can vocalize some sounds and words including Momma, Dadda, PopPop, Nana and Papa. He also uses sign language with a few consistent signs that he uses to communicate basic want and needs. He requires full assistance when walking and wears AFO braces to help support his feet and legs. He can take a few steps on his own when he’s highly motivated. If he does walk, he tires very easily and can only walk short distances. His home is currently not wheelchair accessible. When he needs help with mobility, his family carries him from room to room. He uses a wheelchair for mobility outside of the home. Christian is such a laid back kid and just goes with the flow. He can be quite the jokester. He loves to be silly and get a reaction out of you. He enjoys looking at pictures of family members and friends. He has a special memory book of photos that he looks through every day. He also loves going on family vacations to the beach and Disney World. He enjoys watching his favorite shows when he’s relaxing. Christian’s favorite place to unwind and be free is his bedroom. That is why Sunshine on a Ranney Day is thrilled to be able to give him a dream room makeover and renovate his bathroom to be accessible. This project will soon be under way and we hope that you will get a kick out of seeing the finished product. This will be a labor of love and we invite you to join us in support of this venture.

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Photography by Dinah Sutton Photography

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Photography by Sweet Life Photography by Kim

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Joseph

Written by Garrett Nantz on June 25, 2021. Posted in Meet the Kids.

19 Years Old
Spina Bifida

We’d like to announce that this handsome man, Joseph, will be the lucky recipient of a dream room makeover and bathroom renovation from Sunshine on a Ranney Day. He is not only charming, but also a victorious warrior who has won many battles throughout his lifetime. During pregnancy, Joseph’s parents were given the news that Joseph was going to be born with Spina Bifida as well as a Chiari malformation, which is s structural defect in the brain, and hydrocephalus. Joseph was born three weeks early and was immediately rushed over to Children’s Hospital for surgery. He spent the first several months in and out of the hospital and has endured seventeen surgeries over his nineteen years of life.

During pregnancy, Joseph’s parents were given the news that Joseph was going to be born with Spina Bifida as well as a Chiari malformation, which is s structural defect in the brain, and hydrocephalus.

His disabilities do not define who he is and he never lets them slow him down. Joseph always has a smile on his face, loves to laugh and make jokes. He has a deep love for sports and has played Baseball, Wheelchair Basketball and Wheelchair Football. His incredible passion for sports is unwavering and he loves not only to play, but also to watch or help coaching younger teams. He currently helps manage his old 8th grade Middle School team at Vickery Creek Middle. Joseph aspires to work for a professional sports team one day. He is always willing to try new adventures and works diligently to reach his goals. He is encouraged to dream big and he will surely succeed as he never gives up. Sunshine on a Ranney Day is overjoyed to be working on a special renovation project designed especially for Joseph. This project will not only provide him with a fabulous new room, but also an accessible bathroom. Join us in spreading cheer throughout his home so he can enjoy his bright future in style.

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Photography by Dinah Sutton Photography

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Photography by Dinah Sutton Photography

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Jonah

Written by Garrett Nantz on June 25, 2021. Posted in Meet the Kids.

6 Years Old
Heart Defect

Our next recipient of a dream therapy room makeover is sweet Jonah. This blonde haired, blue eyed surfer boy is a six-year-old who is full of life and an absolute joy to be around. He loves watching the Braves play, dancing to songs at Vacation Bible School and reading books. He can often be found playing hide and go seek, making crafts or being silly with his sister. Jonah’s life started differently than expected. After birth, he was found to have a cleft palate. The pediatrician also referred him to cardiology as he thought he heard an inconsequential heart murmur. Following the cardiology examination, Jonah was hospitalized immediately and they gave his parents life changing news. They told them that Jonah had a series of four major heart defects and they couldn’t believe that he was alive. Jonah was hospitalized for twenty-eight days. They were able to monitor him and discovered that he had Hypoplastic Right Heart Syndrome (HRHS), pulmonary stenosis, subaortic stenosis, bicuspid aortic valve and an atrioventricular septal defect. After closing his Patent Ductus Arteriosus, they then put in a g-tube and closed two hernias. His significant medical procedures did not stop there. Months after these surgeries, he endured the Glenn bidirectional surgery. Jonah was also in and out of the hospital several times due to colds and viruses. He had his cleft palate repaired when he was approximately a year and a half old.

Jonah was hospitalized for twenty-eight days. They were able to monitor him and discovered that he had Hypoplastic Right Heart Syndrome (HRHS), pulmonary stenosis, subaortic stenosis, bicuspid aortic valve and an atrioventricular septal defect.

He had kidney surgery at two and a half years old. In June of 2017, Jonah had his third stage heart surgery called the Fontan. Jonah will more than likely undergo another heart intervention in the future. Jonah had his tonsils and adenoids removed in June 2018 and will undergo another palate surgery in August 2018 to correct velopharyngeal incompetence. He is ready to take on all of these procedures with the spirit of a true warrior. Currently, Jonah is considered nonverbal, but is gaining momentum daily in speech. Jonah has a device to communicate, however most often he chooses to use words and sign language to make his needs known. Jonah loves going to school, doing hippotherapy at McKenna Farms, visiting the library and hanging out at Barnes & Nobles. He is a bright child that is willing to help with any chore whether it is yardwork, laundry or unloading the dishwasher washer. Jonah has been a fighter from day one. When doctors tell us that Jonah will not be able to do something, he defies the odds and proves them wrong. They told us that Jonah wouldn’t crawl or walk, but he did! He was tube-fed for years, but after participating in an intensive therapeutic feeding program at Marcus Feeding Clinic, he can now eat any food he wants and drink from cups. Jonah proves that where there is a will, there is a way! He is full of heart and vigor. Despite the challenges he has faced, Jonah’s radiant smile and infectious laughter have both remained constant. Sunshine on a Ranney Day wants to see more of his brilliant smiles and that’s why we can’t wait to finish his dream therapy room makeover! We’d love to have you join us at the unveiling of his newly redesigned therapy room!

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Photography by Nicole Photography

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Photography by Pear Tree Photography

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Devon

Written by Garrett Nantz on June 25, 2021. Posted in Meet the Kids, The Wall Nut.

20 Years Old
Spinal Injury

You may have heard the story. You may think you understand the challenges Devon Gales and his family have faced over the last 2 years since Devon suffered a traumatic spinal injury during a football game between the University of Georgia and Southern University. There’s always more to the story, however, and for Devon and the Gales family, there’s a lot more life to live. Starting the next chapter is where we can help. If you do a Google search for “Devon Gales”, chances are you’ll find pictures of a smiling young man, probably wearing a cross around his neck, and possibly with his Mom, Tish, close by his side. Those are just a couple of the things that have helped Devon through many of the adversities he’s faced in his life. Devon has been dealing with challenges since the day he was born. He was born with a birth defect and almost didn’t make it through his first few days. He persevered from the outset, however, and the world has gained a shining, happy smile, with a spirit to match, as a result. Through the adversity in his life, Devon’s parents, Tish and Donny, have always pointed to God’s plan. It’s been through this profound faith instilled in the entire Gales family that they have pressed forward, confident that God has a plan and a place for us all. Perhaps the biggest challenge to that long-instilled faith was first realized on September 26th, 2015. Devon had only received a few chances to play in the first half of the game. He was committed to do his part on a kickoff return at the beginning of the 2nd half. He saw that opportunity present itself as Georgia’s kicker, Marshall Morgan, charged down the field. Devon put his all into a block, trying to slow Marshall down and, moments later, he was lying on his back, staring at the clear blue September sky, unable to move his legs.

Devon put his all into a block, trying to slow Marshall down and, moments later, he was lying on his back, staring at the clear blue September sky, unable to move his legs.

Tish and Donny had been unable to make the trip to Athens for the game. As they watched from the family’s home in Baton Rouge, The report was that a “Southern player was down on the field.” Tish’s motherly instinct kicked in and she knew Devon was hurt. Getting information about Devon’s status was difficult at first. When a nurse from Athens Regional Hospital finally called, Tish’s only question was “Do I need to be on the next flight to Georgia?” The nurse’s quick response was “Yes, I think so.” As the Gales have continued down this path which God has placed them on, adversities have continued, as well. Their home in Baton Rouge was in an area which flooded only a few months ago. They had previously been struggling with the idea of moving the family to Atlanta. Moving to Georgia would put Devon closer to the care of The Shepherd Spinal Center and the expert care there. The flood, they decided, was another way of God telling them “it was time.” The time has come and this family is being blessed. The community has pulled together to build Devon and his family a new home. Currahee Homes, Paran Homes, WSB Radio took the lead on making this happen. There are some amazing people working on this project. Go over to to learn more about these amazing people. Sunshine on a Ranney Day, along with our designers at Crosby Design Group, are doing the interior design of Devon’s new home and completing his wheelchair accessible bathroom, bedroom, and in-home therapy room. We are blessed to be just a small part of this very large and heart-felt project!

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Photography by Nicole Photography

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Noah

Written by Garrett Nantz on June 25, 2021. Posted in Meet the Kids.

19 Years Old
Spinal Injury

This handsome and adventurous young man is Noah. Exploration of the great outdoors and exhilarating activities fuel Noah’s passion. He lives for adventure and spending almost every waking moment outdoors. While some teens enjoy playing video games for hours on end, Noah prefers to keep his eyes on the sky and feet off the ground. As a young teenager, he spent most of his time pedaling his bike over mountain trails, flipping off boulders into a lake, diving, snowboarding or wakeboarding. He and his friends shared many escapades at skate parks and trampoline parks where he excelled at skilled tricks and flips. His favorite organized sport is baseball and he played in several levels throughout the years, including recreational ball, All-Stars and Travel ball. He even achieved his ultimate goal: playing at Dreams Park in Cooperstown, NY. On July 26 of 2017, everything changed within a split second. Noah was in an accident that altered his future tremendously. He had gone with two of his friends to their favorite trampoline park. They were jumping for most of the afternoon, doing their usual flips and tricks. Noah was working on perfecting a flip when he under-rotated and landed on his neck. This harsh landing ended up compressing his spinal cord and fracturing three vertebrae. Instantly, he lost all feeling from his chest down. His arms and hands went limp and he felt the sensation of being outside of his body. He was rushed to the hospital via ambulance and endured a significant live saving surgery. In this invasive procedure, two rods were inserted to re-align his spinal cord and eleven screws attached the vertebrae to those rods.

Upon his homecoming, Noah faced a new set of challenges as his home was not adequately designed for living with a wheelchair.

Fortunately, the spinal cord was not severed, but he sustained spinal cord injury that left him a quadriplegic. He spent two weeks in ICU and then transferred to an intensive inpatient therapy program for nine weeks. He worked diligently in physical therapy several hours per day to regain motor skills and relearn how to do everyday tasks that previously happened automatically. After inpatient rehab, he spent six weeks in a specialized outpatient therapy program where they continued to target skills that seem so simple. The skills we all take for granted, like rolling over. Through determination and hard work, Noah found himself becoming stronger, regaining sensation and learning how to live life after his injury. He and his therapists worked on getting dressed, bathing and completing school work. He also learned to mobilize via a wheelchair. This was quite different than what he was used to. Upon his homecoming, Noah faced a new set of challenges as his home was not adequately designed for living with a wheelchair. The home’s floor plan included narrow doorways and neither a bathroom nor a bedroom on the ground floor. He only had access to two rooms in the house and the formal living room had to become his bedroom. In addition, he was forced to take showers at the local YMCA since there was an accessible shower there. After four months of the day program with outpatient therapy, it was time for Noah to return to school. Since Noah was injured right before his senior year of high school, he missed the entire first semester while he was working to recover. In order to graduate with the rest of his classmates, he doubled up on work and completed the entire year’s curriculum in one semester. To top that off, he graduated with all A’s and B’s. Noah’s hard work and never give-up attitude has paid dividends in academics and rehabilitation. He has regained so much movement that as he has regained substantial movement and feeling below the point of injury that his condition is no longer classified as a complete injury. Noah continues today to work toward reaching his goals. This year, Noah’s sights are set on college. His ambition is to study audio and video technology. Although he previously biked down mountains, he is currently learning to maneuver his wheelchair on the rugby court as a member of the Shepherd Smash team at Shepherd Rehabilitation Center. Noah is determined to enjoy many more adventures despite his injury and refuses to allow the challenges he faces to get in the way of his dreams. He faces life with gratefulness and a reverence for those who have shown him an outpouring of love. He is especially thankful that Sunshine on a Ranney Day will be renovating his bathroom and bedroom to allow his greater independence and mobility. Please join us in bringing a little sunshine to Noah’s life by supporting this project and coming to the great reveal party!

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Photography by Nicole Photography

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Bristol

Written by Garrett Nantz on June 19, 2021. Posted in Meet the Kids.

5 Years Old
Leukemia

Howdy! This is Bristol, a steadfast warrior who has earned the title, “Bristol the Pistol” due to his perpetual triumphs and incessant desire to live life to the fullest no matter what obstacles come his way! His battle began in 2015 as a rambunctious toddler who began to experience vague symptoms that made his pediatrician suspicious. After a few rounds of testing, his parents were given the news that no parent ever dreams of hearing. Bristol had cancer. B Cell Acute Lymphoblastic Leukemia (ALL) to be exact. This rare type of cancer that was once not thought of, has become a common term in Bristol’s home. Aggressive treatment began immediately and he had the love and support of friends and family with him from the start. He has now endured 38 months of treacherous treatment that is never easy for a child to endure. Chemotherapy, blood work, spinal taps and never-ending physician visits. However, Bristol takes on every challenge with a can-do attitude and that positivity and vigor is what has kept him overcoming. During this process, Bristol was also given the diagnosis of Muscular Dystrophy. The addition of this diagnosis has not slowed him down. His spunky personality is what gets his through and gives others the desire to help him heal. Bristol is a true fighter who has proven that a country boy can survive. He loves riding horses, John Deere tractors and enjoying all that the great outdoors have to offer including fishing, hunting and camping. A hat and cowboy boots have always been part of his favorite attire. A spectacular dream bedroom makeover is just what the doctor ordered to keep him smiling ear to ear!

He has now endured 38 months of treacherous treatment that is never easy for a child to endure. Chemotherapy, blood work, spinal taps and never-ending physician visits.

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Photography by Laurie Christine Photography

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Photography by Birchfield Photography

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Eli

Written by Garrett Nantz on June 18, 2021. Posted in Meet the Kids.

9 Years Old
Neuro-Degenerative Disease

Meet Eli. This little angel is nine years old and brings joy and hope to all who know him. Eli was born following normal pregnancy with no complications. He was a healthy, perfect baby boy and developed normally. He hit all his milestones quickly and thrived. The tiny bundle of joy grew into a teetering active toddler. Surprisingly, at 18 months old he had a seizure while sitting on their bed. The doctors brushed it off, stating that many children will have at least one seizure as they develop. Unfortunately, the next seizure occurred the very next month and they persisted daily. Doctors tried medication after medication, and even a surgery, but to no avail. They gave Eli a diagnosis of Epilepsy, but it did not seem to adequately explain why he also experienced significant regression in his developmental skills. After a battery of multiple assessments, the heartbreaking realization that something more serious was going on. Eli has a rare genetic disease called Tay-Sachs. Tay-Sachs is a hereditary neuro-degenerative disease. It is a build-up of fatty acid on the brain which causes sections of the brain to become deprived of all functions. A person with Tay-Sachs slowly loses functional abilities including walking, eating, hearing and vision. His family is cherishing every single moment they get to spend with him. Eli just celebrated his 9th birthday. Sunshine on Ranney Day aims to help make Eli’s days a little brighter by giving a concrete carport area for their van to park to help the family get him in and out of his home easily.

A person with Tay-Sachs slowly loses functional abilities including walking, eating, hearing and vision. His family is cherishing every single moment they get to spend with him.

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Photography by Kristi Weaver Photography

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Gabrielle

Written by Garrett Nantz on June 16, 2021. Posted in Meet the Kids.

14 Years Old
Muscular Spasticity

Gabrielle is a beautiful young teenager that is resilient, brave, determined, vibrant, feisty, and loving. She is full of personality and is a social butterfly. She keeps people laughing. Her contagious smile symbolizes her victories over many challenges in her life. Gabrielle means “God is my strength.” Her name exemplifies how, with God’s power and resources, she has triumphed over surgeries, academic demands, physical opposition, and personal challenges. Her parents were told by doctors that she may never walk, talk or do anything. She certainly proved them wrong. Gabrielle’s story began with her being diagnosed with Schizencephaly at six months old. She has Muscular Spasticity in her arms, hands, legs and feet. Her left side, arm and leg have minimal movement.

She is unable to walk and utilizes her power wheelchair for mobility and requires assistance in transitioning activities.

She is unable to walk and utilizes her power wheelchair for mobility and requires assistance in transitioning activities. Her right side is more flexible and allows her the ability to move for feeding herself and other activities such as writing or typing on the computer. Gabrielle’s story continues with highlights of her growing from glory to glory. She is experiencing the teenage years just as she should, having fun and reaching for great goals. Gabrielle enjoys computers, editing YouTube videos and basketball. She wants to become a video editor. She loves music, dancing and playing with her best friend and cousin, William. Her favorite PS4 games are Fortnite and NBA19. Sunshine on a Ranney Day was so excited to be able to give Gabrielle a life changing wheelchair accessible bathroom and dream bedroom makeover! This will not only help Gabrielle, but will majorly help her parents so they don’t have to lift her as much! We love our job!

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Photography by Niki Murphy Photography

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Photography by Niki Murphy Photography

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Caliyah

Written by Garrett Nantz on June 15, 2021. Posted in Meet the Kids.

4 Years Old
Grease Fire Burn Victim

This radiant beauty is Caliyah. She received the bedroom makeover of her dreams. Caliyah a is spirited and poised four-year old. She loves the splendor of glitz and glamour. He favorite things to do include dressing up, doing her make-up, watching You Tube tutorials for applying make-up and of course, magical unicorns with sparkling horns. In her spare time, she enjoys producing videos of her own and she is quite the star. She certainly shines bright and loves to inspire others. Her sweet nature and perseverance are moving indeed. This year, Caliyah experienced a horrific tragedy that changed her life forever. She was severely burned in a grease fire that started in the kitchen. She suffered third degree burns on her face and arms. The pain she suffered was so tremendous that doctors put her into a medically induced coma. She spent a month receiving intensive care in the hospital followed by rigorous physical therapy.

Sunshine on a Ranney Day gave her the glamorous bedroom makeover of her dreams! It promises to be as beautiful as she is!

She missed her preschool graduation ceremony since she was hospitalized, but the school and hospital joined forces to bring a special graduation ceremony of her own right to her room. Being able to enjoy the rite of passage of graduating preschool really lifted her spirits. Although Caliyah is making great progress, she has a long road of recovery ahead of her. Her scars are still healing and she is not able to go in direct sunlight. Sunshine on a Ranney Day gave her the glamorous bedroom makeover of her dreams! It promises to be as beautiful as she is!