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Tag: Dream Bedroom

Hudson

  • 4 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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Ciaran & Geordan

  • 19 & 16 Years Old

  • Lebers Congenital Amaurosos, Severely Autistic, Immune System Disorder, Tic Disorder

Ciaran and Geordan were both born with major disabilities. 19 year old Ciaran is totally blind and significantly autistic. On top of that, he has a tic disorder (tourette syndrome) and an immune system disorder. He has no sense of safety and will wake up throughout the night and bang on walls, doors, windows, and even his bed – waking up his brother. 

Geordan is 16 and was also born blind. He was also diagnosed with pretty severe non-verbal autism. Geordan also has no concept of safety, making the level of care required for the two boys quite extensive. With their mom’s recent cancer diagnosis, both parents work tirelessly to care for the boys and give them the fullest life they can.

They are both passionate about music and have an acute sense of hearing for pitch and tone due to their blindness.

Ciaran and Geordan are highly anxious and noise sensitive, so therapy items like swings, trampolines and instruments are very calming to them. They are both passionate about music and have an acute sense of hearing for pitch and tone due to their blindness. Both boys are unique and talented in their own ways, something that is so evident in their passions and skills! The space that Sunshine on a Ranney Day is providing for them will be life-changing in regards to their independence and individual needs.

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Photography by Niki Murphy Photography

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Bryce

  • 5 Years Old

  • Cerebral Palsy

Bryce is a vibrant and remarkable 5 year old boy who lights up the room. Bryce was born at 27 weeks and spent 2 months in the NICU . As an infant, he was diagnosed with Cerebral Palsy. Most of the time, he utilizes a walker and crutches to get around but recently received a wheelchair for long distances. His diagnosis does not deter him from his eagerness to explore and become independent.  He was destined to stand out in the most amazing way while warming the hearts of everyone who crosses his path. His great sense of humor and clever personality is loved and embraced by so many.

“Bryce is the nucleus of their village that keeps everyone connected and in high spirits.”

He attends kindergarten at Still Elementary with his 10 year old sister, London. His family feels so fortunate to have such a strong network of individuals who genuinely care about his mental and physical well-being. Bryce is the nucleus of their village that keeps everyone connected and in high spirits.

Bryce enjoys drawing and telling elaborate stories with fantasy and supernatural themes. He can spend hours creating intricate designs with magnetic blocks and participates in the Horizon Baseball League for children with special needs. We have no doubt that Bryce’s compassionate spirit, inquisitive mind and strong determination will go a long way!

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Photography by Nicole Wood Photography

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Noah

  • 11 Years Old

  • Rasmussen Encephalitis

Noah was born at 32 weeks with no complications. He was a healthy active kid until 6 yrs old when he had his first seizure episode in the summer of 2018. Doctors couldn’t figure out why Noah was having seizures 10 times a day until an amazing doctor at Children’s Healthcare of Atlanta figured out what was wrong with him. In the spring of 2019, Noah was diagnosed with Rasmussen Encephalitis. In late fall of 2019, he had his first brain surgery (Right Hemispherectomy) and his last seizure.

“Noah has always had an open mind with the outcome of his surgery.”

Today, Noah is now physically disabled on the left side of his body and needs help with day-to-day needs. Noah has always had an open mind with the outcome of his surgery. He remains strong and motivated to regain some of his independence while playing sports with Gwinnett Heat in Gwinnett County. He has physical/occupational therapy 2 times a week, Botox every 4-6 months, and is doing amazing with his long recovery. Noah is super excited to have a space he can call his own where he can move around freely and independently.

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Photography by Niki Murphy Photography

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Cade

  • 20 Years Old

  • Spinal Injury C4 Incomplete

Cade graduated highschool in May of 2020. In January of 2021, he was a passenger during a motor vehicle accident and was ejected from the vehicle. Miraculously, he survived. He spent 5 days in a local ICU and was transferred to Shepherds Spinal Center in Atlanta where he spent one week in ICU followed by 9 weeks of inpatient rehab for a spinal cord injury. He was given the diagnosis of C4 incomplete (when damage is dealt about mid-way down the cervical spinal cord), spent 6 weeks on a vent, and is now in a power wheelchair to get around day to day.

“Miraculously, he survived.”

Cade is making progress towards being functional, but right now still requires around the clock care for someone to bathe him, feed him, etc.. even scratch his “itches”! His parents were able to remodel their bathroom so that he can shower there, but his current room is tough for him to get around in and he can’t get in his bathroom. He plans on going to college online at Georgia Highlands for the fall of 2022. While there, he will be studying Psychology and Computer Animation, perfectly in line with his interests of Anime, Star Wars and cars. The world is blessed to still have Cade in it and we are so excited to help make modifications that will allow him to be more independent!

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Photography by Carrie Birchfield Photography

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MarQuis

  • 18 Years Old

  • Mitochondrial Encephalopathy

MarQuis and his twin brother were born without any complications.  When MarQuis was around 10 months old, he was sick with a typical virus and woke up the next day a completely different child.  The initial thought was that MarQuis had a seizure until he had another episode.  MarQuis and his family traveled to multiple cities for an official diagnosis and finally at the age of 2 after a muscle biopsy MarQuis was diagnosed with mitochondrial disorder.  In 2005 MarQuis had an episode that the doctors did not think he would survive but God had other plans.  Fortunately, that was the final episode. 

“MarQuis has a love for life and speaks his own language to communicate his needs.”

MarQuis is permanently disabled and needs assistance with all daily needs.  MarQuis has a love for life and speaks his own language to communicate his needs.  His house is currently not accessible which is very challenging for his family and caregivers.  MarQuis and his family are so excited for MarQuis to have a space that is truly his own and reflective of his personality!

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Photography by Jennifer Boxley Photography

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John & Joseph

  • 10 & 9 Years Old

  • MECP2 Duplication Syndrome

John and Joseph are brothers born 16 months apart with MECP2 Duplication Syndrome or M2DS. This rare genetic condition causes many issues such as severe intellectual disabilities, impaired motor function, epilepsy, spasticity, speech, as well as gastrointestinal and respiratory issues.

When John was in his toddler and pre-school years, he worked hard to make developmental strides that most people take for granted.  Crawling and walking were milestones that, with therapy and determination, John achieved by the age of 4.  After enjoying his success for only a few short years, John began to experience seizures at the age of 6.  The onset of epilepsy caused John to lose skills that he had once gained such as walking, eating, and even turning pages in his books.  John now gets all of his nutrition through a G-Tube and uses a wheelchair for mobility.  John has also required frequent and lengthy hospital stays at Scottish Rite for respiratory infections and seizures. 

Despite the tremendous setbacks that John has experienced, he is an absolute joy to encounter! He embodies the phrase, “Sunshine on a Ranney Day” because even when things seem like they couldn’t get much worse to those who love him, John’s will, determination, strength and love shine through the darkness to declare that brighter days are ahead!

John and Joseph are overcomers who know that life is not a race where the finish line is at the end but rather, it is a celebration of what one has achieved at the end of each day!

Joseph’s primary struggles with M2DS are developmental.  Joseph began walking just a few weeks shy of his 2nd birthday and has been on the go ever since!  Fine motor skills, such as eating and writing with utensils, have been challenging for Joseph.  He communicates non-verbally and is learning to use a picture exchange binder with the hopes of getting a communication device in the near future.  

Both John and Joseph bring so much joy to their family, friends and everyone who has the pleasure of meeting them.  Their older sister, A.J., is their favorite person in the world and their favorite activities include taking walks to the lake and riding in the golf cart.  John and Joseph are overcomers who know that life is not a race where the finish line is at the end but rather, it is a celebration of what one has achieved at the end of each day!

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Photography by Nicole Wood Photography

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Griffin

  • 11 Years Old

  • Autism

Griffin was born at full term without any health problems. Early on, he met all of his developmental milestones and even did some things early.  Within the first week of birth, Griffin was holding his head up and looking around as well as rolling over.

Griffin’s family started noticing around 18-24 months that things had started to change for Griffin developmentally. Griffin’s eye contact and vocabulary had decreased and you could see a disconnect when he was around other children his age.  Griffin was so young which made it challenging to diagnose.  It was puzzling to see that Griffin’s vocabulary was advanced but his communication was far behind.  Shortly after Griffin turned three his family started the process of testing for Autism which was the eventual diagnosis.  Griffin’s young age made it difficult to really know what this meant for Griffin long-term.  Griffin receives speech and occupational therapy and most importantly interaction with other children not on the spectrum which has benefited him more than any other therapies.

“Griffin has always been full of energy and was running around the house by 10 months old.”

Present-day, Griffin is thriving! He always makes people laugh and has such a fun personality. Griffin has developed a love for art and one of his favorite hobbies is drawing.  Griffin’s life has inspired some amazing things to happen. Griffin’s dad, Michael, works in law enforcement and created a program where officers visit special needs children at school and become their friend first. They teach the kids that officers are there to help and how to properly act with law enforcement and to not be afraid.  Griffin and his mom have a social media platform where they share about products, events, and places that are Autism friendly.  Griffin’s family continues to raise awareness and shine a positive light on Autism and they are grateful for everyone who has been a part of the journey!

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Photography by Carrie Birchfield Photography

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Celia

  • 13 Years Old

  • Leigh’s Disease

Celia and her twin sister were adopted from China at the age of 26 months. Celia and her twin are currently thirteen years old and the youngest of six kids.  During adoption, it was thought that Celia had cerebral palsy (CP) but after extensive testing, Celia likely has a mitochondrial disorder, which is neuro-degenerative, called Leigh’s disease or a Leigh-like syndrome. 

“She even has a superpower; Celia can use her toes to type and play games on her iPad!”

Celia cannot walk unassisted, use her hands purposefully, or eat by mouth.  Celia has endured many surgeries and hospitalizations and unfortunately had a setback in 2020 during a procedure that was supposed to help improve her dystonia (painful involuntary muscle contractures).  Celia lost the ability to speak, process information, sleep, and most devastatingly her sweet spunky personality.  In 2021 the procedure was reversed and hopefully with the love and support of Celia’s family, their faith in God, and extensive therapies she can regain what was lost.

Celia’s family wishes everyone had a Celia in their lives.  She’s joyful, happy, has an amazing smile, and loves her family.  She even has a superpower; Celia can use her toes to type and play games on her iPad!  Celia has good days and bad days, she struggles with strength, stamina, communication, and mental cognition but through it all, she is the brightest of lights and a gift to all that know her.  Celia truly is God’s precious blessing!

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Photography by Nicole W Photography

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Braxton

  • 12 Years Old

  • Spina Bifida Lipomyelomeningocele

Braxton is 13 years old and the oldest of 3, he’s a big brother to Wyatt and Landry.  On most days, you can find him playing basketball in the driveway, gaming on the Xbox, or begging his mom to take him to the Lego store.  Braxton was born with Spina Bifida/Lipomyelomeningocele and has endured over 14 surgeries to date at Children’s Healthcare of Atlanta.  Braxton attends Veritas Classical Schools which is a home school hybrid.  This allows Braxton’s schedule to be more flexible when medical appointments, therapies, and surgeries arise.  Although ambulatory, Braxton’s mobility has lessened over the years and he’s relying more on his wheelchair and other assistive devices to accomplish daily activities. 

“He is very creative and has an 8-foot table housing a giant city that he has designed and continuously recreates all himself.”

Braxton sometimes struggles physically since he is unable to run and walk like most kids his age but that has not slowed him down!  Braxton is the athlete of his family, playing both wheelchair basketball and competing in adaptive track and field for BlazeSports.  He would actually like to participate in ALL adaptive sports, but he would need his own chauffer.  On the basketball court, #5 plays with his whole heart and fierce determination!  Braxton recently made the Prep All-Tournament Team at the NWBA Nationals in 2022.  He hopes to play wheelchair basketball at the collegiate level as well as dreams to make Team USA one day.   On the track, he is a lover of field events and broke the national record for shotput in 2019.  Braxton is also an avid member of Scouts in Troop 1459 and is on track to earn his Eagle Scout Ranking in the future. He recently went on a 4-day adventure to Cumberland Island where he was able to hike over 20 miles with his troop in his Grit Freedom Chair.   Braxton is also a LEGO MANIAC and has thousands and thousands in his room!  He is very creative and has an 8-foot table housing a giant city that he has designed and continuously recreates all himself. He is an amazing artist as well and loves to veg out and play video games with his brother and friends. Braxton is active in his church youth group at North Point Community Church and is surrounded by amazing leaders and friends.  

Braxton’s family calls him Braxton the Brave as he inspires his family everyday through the path that God has laid out before him.  Braxton and his family are so excited about his bedroom and bathroom accessible makeover.  Gaining that extra independence will be a game changer as well as make each day brighter!

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Photography by Niki Murphy Photography

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