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Tag: Dream Bedroom

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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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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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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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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