Tag: 2021

Kennedy

Written by Joe Lane on October 18, 2021. Posted in Meet the Kids.

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

Written by Babby Norsworthy on September 20, 2021. Posted in Meet the Kids, Randall Paulson Architects.

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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Eliavah

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

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

Written by Garrett Nantz on June 26, 2021. Posted in Chattahoochee Tech Design Program, Meet the Kids.

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

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

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

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

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

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

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

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

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

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

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

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

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.