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Author: Clareece Cunningham

Hudson

  • 6 Years Old

  • Gaucher Disease Type 2

Hudson is the youngest of 3 children, following his sister Olivia (8) and brother Gavin (10). He was born a happy healthy baby. Around 4 months of age, Hudson’s parents started noticing some differences in him, such as weight loss, difficulty nursing, and choking. After a few significant episodes Hudson was hospitalized around 6 months of age for further investigation. After a 16 day stay in the hospital and lots of testing Hudson was sent home with no answers and told to follow up with genetics. At the young age of 9 months old, on July 2nd, 2018, Hudson’s mom Nichole received the phone call that would forever alter the life their family had once dreamed of. Hudson was diagnosed with a rare, incurable, terminal, genetic disease, Gauchers Disease 2. They were told to put Hudson on hospice, that he would have no quality of life, never walk, talk, or live past the age of 2. Nichole’s response to them….. “but God”.

You’ve never had a hug ‘till you’ve had a Huddy hug!”

Hudson is now an amazing 5 year old who is living his BEST life! His family has and will continue to go to the ends of the earth for Hudson and his siblings. For the past 4 years they have made the drive to D.C. every 3 to 6 months for Hudson’s geneticist who is the only one in the US willing to give him a chance at life! In fact, Hudson is now being followed by geneticists all over the world as he is re-writing the books and making a way for all the children to come. 

Hudson is a very social kid, who thinks his siblings have hung the moon. He loves sports (football, basketball, and baseball), movies (Toy Story is his favorite), and has a smile that lights up his family’s world! He’s also known to give the BEST hugs. You’ve never had a hug ‘till you’ve had a Huddy hug! 

Unfortunately, Hudson is very susceptible to viruses that have kept him in the hospital ICU for more than half of his life. Because of this, they have had to keep Hudson confined within the walls of their home, limiting his exposure to the outside world. Sunshine on a Ranney Day is honored to bring light and joy into the walls that surround Hudson to help him continue living his BEST life!

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Photography by Vicki Alsup Photography

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István

  • 12 Years Old

  • Cerebral Palsy, Hearing Loss, Hip Dysplasia, Chronic Lung Disease & Global Developmental Delays

István had a traumatic beginning, being born a micro-preemie at 25 weeks gestation. Only weighing 1 lb, 6 oz, he fought hard to live. Being a micro-preemie comes with so many challenges – it seems like every decision a parent makes to ensure the baby’s survival comes with a set of lifelong effects. For instance, István contracted MRSA in the hospital (which required broad-spectrum antibiotics) and was on a ventilator for months. One or both of these life-saving measures is more than likely responsible for his unilateral hearing loss. István also has hip dysplasia and cerebral palsy, among other medical challenges.

“István’s blissful character proves that an extraordinary beginning does not determine your life’s path.”

Nonetheless, István does not allow any of his diagnoses to hinder who he is and who he wants to be. He is a very joyful and fun child, always finding a joke to make you laugh or spouting random history facts that remind you of your middle school history class that you probably loathed. In his free time, István dreams of being a history teacher with an RV, so he can enjoy random camping trips across the US. István is an avid reader – reading mostly history books about World War II, the American Revolution, and Ancient Rome. As a homeschooler, TV time is limited in their household. However, when István is offered time to watch television, he loves watching the History Channel, documentaries, and movies in black and white. István’s blissful character proves that an extraordinary beginning does not determine your life’s path.

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Photography by Nicole Bryant

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Liam

  • 16 Years Old

  • Duchenne Muscular Dystrophy

Liam is a funny and artistic 16-year-old living with Duchenne Muscular Dystrophy. DMD is a fatal, genetic disorder marked by progressive muscle loss due to missing exons within his DNA that produces a necessary protein. He began using a wheelchair for long distances when he was eight and lost the ability to stand and walk at 12. Showering and other activities of daily living are very difficult for him now.

A typical weekend will find him and his siblings in one game room at their stations off on an epic adventure together!”

He is an epic gamer. His gaming PC allows him to interact with friends and family, near and far, within a level virtual playing field. A typical weekend will find him and his siblings in one game room at their stations off on an epic adventure together! Liam also uses creativity to explore his thoughts and feelings. He will often say “Can I have my art stuff?” so he can draw while he watches his favorite YouTubers, Ten Hundred, Jazza, and Ace of Clay. He has multiple shelves holding dozens of sketchbooks.

One of the greatest challenges caused by DMD is that his bathroom is difficult to navigate. Liam used to love taking long, hot showers to relieve the stresses of his day and the ache in his weakened muscles. When he lost the ability to stand, he lost the ability to shower comfortably. What was once a joy has become painful, both physically and emotionally. Sunshine on a Ranney Day is looking forward to creating a space that will bring back some of that relief while showering, as well as tailoring it to Liam specifically!

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Photography by Kelley Wenzel

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Marie & Alondra

  • 17 Years Old

  • Diastrophic Dysplasia & Scoliosis

Marie was paralyzed at 8 months old and then adopted by mom Michele at age one. She’s had a life of ups and downs; like most people. Her disability caused scoliosis which meant over 20 surgeries for back rods, lots of days of school missed and then she developed a seizure disorder at age 10. Her seizures are not predictable, so she cannot spend much time alone as she needs an adult to be there in case she has a seizure. 

Marie is a fabulous athlete. She plays basketball for Blaze sports all girls/women team and wheelchair tennis. She is very kind and helpful to others; always willing to teach her classmates math or lend a hand around the house. She is currently studying children’s healthcare in college. 

The home her mom has purchased will be where Marie learns to live independently. This venture will tremendously help her gain the necessary independence that all young adults long for; without the remodel, Marie cannot reach the next milestone in her life: learning how to live in her own home with just a little help and eventually be totally independent.

“Marie & Alondra will be neighbors; living in the same duplex and equally working towards more independent living.”

In her current living situation, Alondra has to be carried through the home by her parents because the hallways aren’t wide enough for her wheelchair. This keeps her from being independent, but with an accessible space she can do most things on her own.

For seven years, Alondra has lived in a home inaccessible to her needs. She has had many back surgeries and is in physical therapy to learn how to manage life in a power wheelchair. She plans on living with her parents for many years to come, so a home that is accessible to her will be life-changing. Alondra is applying to a technical school to be a medical assistant. Her favorite color is burgundy, and she loves lively Spanish music.

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Photography by Marcelino Aguilar

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Kendall

  • 16 Years Old

  • Traumatic Brain Injury

Kendall’s parents are high school sweethearts and had three daughters and one son. Camryn, Kendall, Chase and Kaiden all have such beautifully unique personalities and roles within the family. The matriarch of my family is Kendall’s grandmother. She is affectionately known as Grandma to all. Although she is a feisty and fiery golden ager, she is the peacemaker of the family. Together they are Team Thomas. They are a team not because of their quantity, but because their togetherness is their happy place. They are Team Thomas, party of seven, and nothing can break them.

Kendall has a giving spirit and is loveable. She’s a hard worker and very passionate about football. She has always danced to her own beat and always thought outside of the box. Hence, the only female on the North Paulding High School freshman football team. She also played football in fifth grade. Kendall was very active. She refereed soccer, briefly played Lacrosse, loved babysitting, walked dogs, danced at church, and loved volunteering. Her favorite color is pink. Her favorite artists are Beyonce followed by Fantasia, Alicia Keys, and Chris Brown. 

“Kendall has always danced to her own beat and thought outside of the box.”

Their story and Kendall’s life suddenly changed on January 11, 2022, when the actions of one person had a piercing and life-altering effect on Team Thomas.. It was the unimaginable tragedy and near fatality of Kendall, who would later become the epitome of the power of prayer. It was that Tuesday, January 11, 2022, when Kendall was tragically struck by a vehicle at school landing on the left side of her head in front of her 11-year-old brother Chase and several others. Kendall was unconscious for almost three months. She sustained a traumatic brain injury and was fighting for her life. Due to the severity of her injuries, she has had to relearn how to do everything, from talking to walking. She has had four brain surgeries and three other procedures to accommodate her breathing and feeding. Although Kendall has made remarkable and miraculous improvements, she still has a long way to go. Nothing much has changed in regard to her infectious spirit, big personality, and love for Beyonce. Her favorite things to do now are singing and going to church.

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Photography by Catelyn Fraser

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Naji

  • 19 Years Old

  • T4 to L5 Spinal Injury

Naji is a nineteen-year-old young man, born on April 5, 2004 with a congenital heart defect that necessitated four open heart surgeries. His plans after high school were to pursue college degrees in both finance and law. Unfortunately, his plans were put on hold after sustaining a spinal cord injury in September 2022.

The injury Naji sustained in September 2022 caused him to become paraplegic. He was hospitalized for several months after his surgery for both recovery and extensive in-patient rehabilitation therapy. The nature of his injury by definition involves an extremely long recovery, including extensive physical and occupational therapy, lots of dedication and hard work to his treatment plan. Other hurdles he is having to navigate in addition to his paralysis are: the management of constant pain, neurogenic bowels, neurogenic bladder, emotional and psychological stress and anxiety.

“He is dedicated to … pursuing a career that would allow him to become a productive member of society – to give back what society has graciously given him.”

Naji is an extremely intelligent young man, as well as being very sensitive and caring. He has a unique sense of humor, loves animals and in fact has two dogs and a kitten: Oreo, Tango and Bear. He is dedicated to achieving recovery, going to college and pursuing a career that would allow him to become a productive member of society, and to give back what society has graciously given him.

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Photography by Niki Murphy

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Emery

  • 6 Years Old

  • Rubinstein-Taybi Syndrome, Agenesis of the Corpus Callosum, Chiari Type 1, Severe Photophobia & Tethered Spinal Cord

They call Emery their ray of sunshine. She radiates joy, is extremely determined and spunky, loves music, spinning, and is always up for an adventure. Her favorite outing is going to Home Depot and spending her time in the ceiling fan aisle which is one of her absolute favorite items since birth. A day with Emery is never boring. From her eclectic music taste ranging all the way from “Carry On My Wayward Son” by Kansas, The Piano Guys, to Wheels on the Bus, she will keep you on your toes and provide you with loads of laughter. 

“The way she sparks joy even in the toughest circumstances is one of the many things her family adores about her.”

Emery was born with Rubinstein-Taybi Syndrome, a rare genetic syndrome that affects every process and organ system in the body in different ways, Agenesis of the Corpus Callosum, which means the bridge between the right and left side of the brain is missing, chiari type one, a malformation of the skull that caused the brain to protrude down into the brain stem, severe photophobia, and a tethered spinal cord. All of these diagnoses branch off into more diagnoses that make her a very complex and rare little girl. Their day to day life is filled with medicines, therapies, appointments, medical trips to Cincinnati, and facing the unknown head on. But their days are also filled with deep abounding joy, laughs, family adventures, and fierce love. So many people tell them that Emery is so lucky to have them as parents but they always say that they are the lucky ones to be given such a gift as the privilege to love her.

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Photography by Donna Hagin

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Oakley

  • 9 Years Old

  • Spina Bifida & Hydrocephalus

Oakley was born in China in March of 2014. She was found in a baby box, and taken to the orphanage. Oakley has Spina bifida, and this is likely the reason her biological parents were unable to care for her as best as she needed. Her medical file looked really complex and scary, but the moment her family saw her picture, none of it mattered, whatever it looked like. They began the process to adopt Oakley when she was about a year and a half old, and finalized the process just before she turned two. 

Because of her Spina bifida, Oakley is paralyzed mid thigh down. She was also born with hydrocephalus and tethered cord syndrome that required surgery on her spine. Oakley uses a wheelchair but when she is at home, she likes to be out of her chair more than when she is at other places, so she will scoot around using her arms. She has some seriously strong arms! She can show you how to do a pull up or two under the table! And there is really nothing she can’t figure out a way to make work where she needs to. 

Oakley is the happiest, most joyful, hilarious child you will ever meet. She has no cognitive delays, and her sense of humor is on point. She is sharp. So smart. Her family likes to say she is 8 going on 22. She seriously runs the ship. She keeps everyone in the house in order, and I am pretty sure she does the same at school. She is a social butterfly, and every kid loves her. You would never know in her tiny little life that she had ever dealt with anything. She’s the one who reminds her family to be grateful, to not forget what they have, and to find the joy even where it seems it shouldn’t be. 

“You would never know in her tiny little life that she had ever dealt with anything.”

For her, a wheelchair accessible bathroom or a ramp will mean the world. Currently, they carry her in and out of the house to and from the van when they leave and come home. A new bathroom ahead of beginning her new bowel management process will be such a sweet step towards making her more independent and giving her somewhere private that she would actually enjoy being in during this process every night. She is also starting to get heavier as she is getting older, so this makeover will make the bathroom process much easier for her family, as well. But she finds such joy in such little things, this would truly make her world. She longs to be independent, but never complains about not feeling completely so. She is truly sunshine on a rainy day. She radiates joy like no other child. Her laughter is infectious. Her knock knock jokes are no joke. They’re the real deal. She is peace, and love. The no nonsense, no fuss attitude she has is contagious, and it changes everybody else’s environment. Her family is so much better because she is here.

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Photography by Hales Photo

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Glenn

  • 14 Years Old

  • Cerebral Palsy, seizure disorder, oropharyngeal dysphagia, spastic quadriplegia and developmental delay

Glenn was born a twin at 38 weeks. However, his identical twin passed during the pregnancy at the 16th week. Several ultrasounds during the pregnancy showed that his head was not growing, and later it was discovered that Glenn would be born with microcephaly. In addition to the microcephaly diagnosis, he was diagnosed with cerebral palsy at birth. As an infant, Glenn had high anxiety and needed to be held. At 10 months, Glenn began having challenges swallowing food. After a swallow study was completed, he was diagnosed with failure to thrive which led to his first surgery and a g-tube placement. When Glenn was two, his mom began to often notice that his body jerked abruptly while he slept and that he startled easily at sudden noises. An EEG and a sleep study was completed and he was diagnosed with seizure disorder. Over time he has had a hip surgery and a spinal fusion surgery to correct the scoliosis diagnosis. Glenn has been very strong and resilient throughout all that he has had to endure and has come out of every surgery with a smile. 

“Glenn has been very strong and resilient throughout all that he has had to endure and has come out of every surgery with a smile.

Due to the effects of the cerebral palsy and the severe spasticity, Glenn has never used his hands, nor has he ever or walked. He continues to suffer from multiple seizures daily. He requires total care, as he is dependent on his family for all his needs. Glenn is a happy young man and is a social butterfly who is a big fan of music. He enjoys attention from anyone who will give it to him, and he loves for people to talk to him! He tries hard to talk and sing, and occasionally you can understand some of his words and phrases. He enjoys observing people and waiting for them to do or say something silly so that he can laugh. When Glenn finds something funny, he will laugh and snort to no end. He wakes up smiling every morning ready to play. He understands everything and knows what he likes and dislikes. He is not bashful at showing the world who he truly is!

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Photography by Niki Murphy

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Amanda, Caleb & Isaac

  • 19, 10 & 10 Years Old

  • Amanda: Spina Bifida

    Caleb: Autism, congenital CMV, hearing & vision loss, sensory issues

    Isaac: Pallister Killian Syndrome 

Amanda, Caleb & Isaac come from a family of eight! Sunshine on a Ranney Day’s plans to create an accessible bathroom and therapy room for them will impact all three in different and wonderful ways.

Amanda is 19 years old and was born in China. She was born with spina bifida which causes her to be paralyzed from the waist down. She has been with her family since she was 13 years old and is such a joy! She uses a wheelchair and other medical equipment and has had many major surgeries since she’s been home. Amanda loves reading, anime, art and is very talented with drawing. She is also very excited to start her first job soon. A handicap accessible bathroom will be such a blessing to her!

Sunshine on a Ranney Day’s plans to create an accessible bathroom and therapy room for them will impact all three in different and wonderful ways.

Caleb is 10 years old and was born with congenital CMV and calcifications on his brain. He was adopted at 4 weeks old and he is such a cutie pie. He has severe autism and loves to quote books, movies and especially nursery rhymes. Singing, swinging and swimming are his very favorite activities. Everyone who meets Caleb falls in love with him. He is funny, sweet and silly. He will enjoy a new playroom/therapy room so very much.

Isaac is 10 and was born with Pallister Killian Syndrome which is a rare genetic disorder that affects the 12th chromosome. He was adopted at 5 months old when he was discharged from the NICU. He is blind, deaf and intellectually he is still their baby. He is an absolute JOY to his family. Isaac’s smile can melt a heart of stone! His laughter echoes through their home reminding his family that there is joy all around us if we just open the eyes of our hearts to see it! He loves swinging, lights, vibrating toys, and being held and tickled. He also utilizes a wheelchair and because of his size, an accessible shower is going to be the most amazing gift to him and to his parents. He will also love and enjoy the new therapy room! 

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Photography by Shana Darnell

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