Author: Garrett Nantz

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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Juan

  • 16 Years Old

  • Cerebral Palsy

Our next recipient of a dreamy home makeover is Juan. This compassionate sixteen year-old is most happiest when he is listening to music, watching movies or playing video games. He is very vigilant about taking care of his things and incredibly grateful for the loving care his mother provides him. Juan was born premature and resided in the NICU for two months. He was considered developmentally delayed as an infant and diagnosed with cerebral palsy as a toddler.

Like most teenage boys, he is taller and heavier than his petite mother. This creates a substantial challenge when transferring him from the wheelchair to the bathroom and into the tub.

Juan’s medical, therapeutic and care needs are extensive and carry a significant expense. He receives special education services at school and attends physical therapy three times per week. His mother is a single parent working full time to provide him with the support and services he needs to achieve his goals. In addition to requiring extensive therapy, he also needs assistance in dressing, bathing, and getting in and out of the car and shower. Like most teenage boys, he is taller and heavier than his petite mother. This creates a substantial challenge when transferring him from the wheelchair to the bathroom and into the tub. The bathroom is too narrow for both of them and is not designed for an individual with special needs. As a result, she has to bathe him in his bed. Not only is this uncomfortable, but Juan also desires more privacy as he nears adulthood. His mom’s greatest wish is being able to gift him a home in which he will be able to achieve independence as an adult. Juan’s greatest wish is to reduce the painful burden of lifting and carrying him that his mother endures selflessly.

Sunshine on a Ranney Day is privileged to have the opportunity to make Juan’s dream come true! With the generous support of our donors, we will be renovating his home to expand his bedroom and transform his tiny bathroom into a fully adaptable bathroom that will make life a lot easier for both Juan and his mom. We hope this gift will lighten their burdens, lift their spirits and evokes endless smiles!

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Photography by Sweet Life Photography by Kim

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Helen

  • 14 Years Old

  • Infantile-Onset Pompe Disease

The name Helen means Shining Light, and that she is. With her fair skin and sweet grin, the room lights up when Helen enters in her wheelchair. Helen has Infantile-onset Pompe disease, which caused the development of cardiomyopathy, progressive muscle weakness, neuromuscular scoliosis, and impairment of respiratory function. She is dependant on others for all aspects of care as she is unable to ambulate and currently maintains very limited upper motor strength to operate her power wheelchair. She receives all of her nutrition and hydration via a GJ-tube.

Helen has Infantile-onset Pompe disease, which caused the development of cardiomyopathy, progressive muscle weakness, neuromuscular scoliosis, and impairment of respiratory function.

With the high level of care required by Helen, her family faces many obstacles in their home. Due to her Pompe disease, she has severe osteoporosis and has suffered fractures from minimal force. One of Helen’s more recent fractures occurred when a caregiver transferred her in her inaccessible home.

Day-to-day life is complicated. On top of it all, as a 14-year-old girl, Helen is too big to be safely bathed. A bedroom and bathroom from Sunshine on a Ranney Day would bring Helen’s family safety and peace of mind and possibly create a little more time for Helen to get out and shine.

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Photography by Maddy Em Photography

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Carson

  • 9 Years Old

  • Autism, Sensory Processing Disorder

As a fan of SpongeBob, sea creatures, aquatic life, Shark Week, and his multiple pets, Carson is like most nine-year-old boys. His favorite things to do are swinging, jumping, and climbing. Carson also likes small places, like a tent or under the bed, to hide if he’s having a bad day. Like all mothers and as a single mother of two, Carson’s mother is concerned with balancing activity and safety.  Having been diagnosed with sensory processing disorder, SPD at age three, and recently diagnosed with Autism, Carson is a sensory seeker who likes to move all of the time. He has received occupational therapy for SPD and worked on fine motor skills. They also worked with the vestibular system for some motor functions of the head and posture, and the proprioceptive senses to help combine sensory information from the inner ear to receptors in the muscles and the joint-supporting ligaments for stance.

Having been diagnosed with sensory processing disorder, SPD at age three, and recently diagnosed with Autism, Carson is a sensory seeker who likes to move all of the time.

As Carson gets older, it will be even more important to have a safe space of his own, including appropriate sensory stimulation.  A custom sensory room from Sunshine on a Ranney Day will give Carson what he needs to be and grow happier and healthier. Together with his family, he will better enjoy their three cats, bearded dragon, and beta fish and will have spent some energy so he can sit down and watch Shark Week like other kids his age.

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Photography by Pear Tree Photography

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Callie

  • 15 Years Old

  • Angelman Syndrome, Burn Victim

This jubilant teenager, Callie, smiles despite her pain and laughs through her tremendous triumphs. The journey through childhood has been a challenge that she has never stopped braving. Callie was diagnosed with Angelman Syndrome as a toddler and suffers significant developmental delays. At the age of twelve, she suffered a tragic accident during her evening bath at home. She was rushed by ambulance to the hospital where she spent six months with severe second and third degree burns covering more than 60% of her body. To complicate matters further, during the first 24 hours in the ICU, doctors discovered a previously unknown blood clot in her right leg which had become aggravated during treatment and her leg had to be amputated above the knee. Callie endured over 21 surgeries with extensive skin grafts for her burns and suffered cardiac arrest due to trauma and complications.

Her only wish is to spend more time with her friends and Sunshine on a Ranney Day is going to grant it!

Callie, who is still in the hospital recovering, is fully dependent on her family and caregiver to meet all of her needs including transferring, showering, hygiene and bathing. She receives intensive physical, occupational and speech therapies and participates in the county’s exceptional education program via the hospital/homebound services division. The acquisition of each skill has been a true feat for Callie. Through tough determination and the support of her therapists and family, she continues to overcome obstacles and celebrate milestones. A room and bathroom that is adapted to meet Callie’s unique needs has become even more essential since her accident and subsequent surgeries. Sunshine on a Ranney Day is excited to have the opportunity to provide Callie and her family with extensive renovations to her home that will make her days a whole lot easier. Plans are in the works for an enlarged bathroom with a walk-in shower, Hoyer Lift to assist with transfers and a designer bedroom with a sensory station and storage for her medical supplies. We can wait to see her enjoy her new platform swing with radiant smiles and echoing laughter!

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Photography by Angie Browning Photography

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Amir

  • 5 Years Old

  • Ohtahara Syndrome (Epilepsy)

Five-year-old Amir recently smiled a huge grin to his dad – something so many parents take for granted, but dad noted as a triumph.

Five-year-old Amir is the joy of his parents’ lives, and like other parents, their goal is to make sure he feels safe and loved. Loved he is. Safe, he is not always. At just two years old and after numerous tests, Amir was diagnosed with Ohtahara Syndrome, a rare type of epilepsy characterized by hard to control seizures and developmental delays.

He is non-verbal, non-mobile has respiratory problems, and vision limitations, and still requires the same care as any five-year-old.

He is non-verbal, non-mobile has respiratory problems, and vision limitations, and still requires the same care as any five-year-old. For most kids, bath time is bonding time and a relaxing way to end the day, but for Amir’s parents, it has become treacherous. It takes both parents to maneuver him safely from his chair to the tub, and bathroom use requires the removal of his permanent tracheostomy as well. Despite his limitations, Amir is able to attend school and uses switch devices to communicate. Due to his wheelchair and numerous medical devices, his current room and bathroom make day-to-day care a considerable struggle.

A safe bathroom and a bedroom designed with Amir’s sensory requirements may be just the thing needed for him to end each day with a big smile.

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Photography by Sweet Life Photography by Kim

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Samantha

  • 21 Years Old

  • Cerebral Palsy

Sunshine on a Ranney Day is at it again and we are excited to break ground on a new project for Samantha. This spirited young woman with the beautiful ear-to-ear smile is Samantha Danielle Caldwell. She entered this world by her sister’s side on October 14, 1998, weighing in at 2lbs, 1oz and was12inches long. She and her twin sister, Nicole, arrived at 24 weeks gestation. Samantha was born first and is older by two minutes!

Samantha was tiny; but, holding her own until she had a grade IV hemorrhage at only three days old. Tragically, this lead to a snowball of illnesses in the NICU. Samantha remained in the hospital for four months before finally being able to go home with her family. She fought diligently, battling many health conditions including apnea and bradycardia bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC), retinopathy of prematurity (ROP), a detached retina in her right eye, an open patent ductus arteriosus (PDA) requiring surgery to close, seizure disorder, and an intraventricular hemorrhage resulting in hydrocephalus. She required surgery for shunt placement, respirators and multiple blood transfusions all before she could go home. Since then, Samantha has continued to endure twenty five surgeries and numerous complications. She is diagnosed with cerebral palsy (CP) and is spastic diplegic. This means the CP affects both lower limbs, hips, and pelvis more than the upper body. Samantha’s muscles are very tight in both legs and her left arm. She continues to overcome daily challenges that come with this diagnosis, as well as many life-threatening complications requiring surgery, hospitalizations and painful medical procedures. Despite all that, she prevails with bold smiles and a will to succeed.

She is diagnosed with cerebral palsy (CP) and is spastic diplegic. This means the CP affects both lower limbs, hips, and pelvis more than the upper body.

Samantha is a happy, beautiful, smart, and independent young lady. She inspires everyone she encounters and is a social butterfly! She attends school at The Joseph Sam’s School for special needs children and is excelling. She has a passion for learning and loves being around her teachers and friends. At home, she lives with her mom, her twin sister and her dog, Bear. Samantha loves music and reading books. She is very adventurous and enjoys riding her bike, bowling, swimming, shopping, going to movies and going out to eat, pizza mostly.

Samantha is nonverbal, communicating through a few spoken words, gestures and the use of an alterative communication device. Samantha uses a wheelchair for most of her mobility. She has a manual one-arm drive wheelchair she can handle independently for short distances (I assist in longer distances). She loves to go to the dollar store, the grocery store and Target and independently maneuver the isles. She also moves independently at school from the classroom to the elevators, different classes, and the lunchroom. She is in the process of obtaining an electric wheelchair that will better suit her long-term needs of transferring, weight distribution and pressure relief.

The renovations that Sunshine on a Ranney Day will provide include a fully accessible bathroom and bedroom which will make it easier to care for her as she grows and desires more independence. Her new room will be a safe haven where she can relax and enjoy her surroundings. We would love to have your support in bringing this project to fruition and cannot wait to see how beautiful it turns out! We hope that you join us as we reveal her new room!

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Photography by Niki Murphy Photography

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Nygil

  • 17 Years Old
  • Cerebral Palsy

When you meet Nygil, you will believe in miracles! This 17 year old with amazing fashion sense and remarkable resilience is going to get a dream makeover where Sunshine on a Ranney Day will expand his bedroom and bathroom to become wheelchair accessible and give him room for hope. Nygil is a devout sports fan and loves the Atlanta Falcons!

Nygil’s birth was truly miraculous. In the womb, Nygil was a triplet. At nineteen weeks gestation, his mother suffered a significant hemorrhage which lead to the loss of his two siblings. Nygil was an unwavering warrior and survived this trauma and was able to remain in the womb until he was delivered at 25 weeks gestation. He weighed only one pound, twelve ounces and doctors told his parents that he would not survive through the night. The family poured lots of love into treasuring him and holding him tight as they were instructed to say their final goodbyes. Nygil had no intention of going anywhere and his determination was a true blessing. He battled the odds in the NICU for four months before he was able to go home. This bundle of strength was sent home with an oxygen tank and monitors to ensure his heart kept beating and he kept breathing. He was diagnosed with cerebral palsy, lung disease, hydrocephalus, epilepsy, quadriplegia, strabismus, asthma and retina detachment. The doctors told his parents that they should give him lots of love and not expect much. Those harsh words cut deep with pain and astonishment. They showered him with undying love and watched him flourish despite what the doctors predicted. Nygil continues to prove that his will to live and shine his light on this world is far stronger than the challenges of any disability. He is developmentally delayed, has endured three shunt revisions, had recurrent pneumonia and been resuscitated. Through it all, he continues to fight like a triumphant warrior. Every single day is a victory.

He weighed only one pound, twelve ounces and doctors told his parents that he would not survive through the night.

Although his parents were told he wouldn’t survive through the night, Nygil has lived seventeen joyous years and is nearing adulthood. As he grows, so does his need for in home care and independence. Granting Nygil a bedroom and bathroom makeover will allow him to maneuver throughout his room in his wheelchair and walker efficiently, leading to greater independence and an opportunity to continue to thrive at home.
We are overjoyed to be able to provide this makeover for Nygil. His new room is sure to be as fashionable as he is and will incorporate all the things that he loves. We hope to see him beaming with joy as we spread a little sunshine his way. Please join us at the big reveal!

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Photography by Niki Murphy Photography

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