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Tag: Dream Bedroom

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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Ellie

  • 5 Years Old

  • Down Syndrome, Congenital Heart Defect

Ellie is a sweet and funny five-year-old with an infectious smile. Ellie was born with Down Syndrome and a heart defect. She had her first open heart surgery at four-months-old and due to medical complications, spent almost five months in the hospital. During our time at CHOA Egleston, we stayed in the newly renovated parent sleep wing provided by Sunshine on a Ranney Day. We spent some of Ellie’s sickest nights there. The rooms were charming and cheerful and allowed us to truly rest and be ready to take care of Ellie in the mornings.

By the time she was two-and-a-half years old, Ellie endured five open-heart surgeries. She has a mechanical heart valve which has significantly improved her heart function. As she gets older, she will outgrow her valve and need additional open-heart surgeries. She has spent nearly 250 days in the hospital and is the bravest girl we know.

Ellie attends many therapies to help her achieve independence and gain strength. Even though it often takes her longer to acquire skills others take for granted, she works hard and never gives up. She is learning how to stand and walk and is getting very close to achieving these milestones.

“Even though it often takes her longer to acquire skills others take for granted, she works hard and never gives up.”

Ellie enjoys spending time with her family. She loves listening to music, especially Baby Shark, and gives the tightest, biggest hugs. Ellie’s favorite person in the world is her 8-year-old sister, Evelyn. Evelyn is Ellie’s biggest cheerleader. Evelyn loves to set up learning stations for Ellie, reads books to her, and encourages her to walk. They enjoy having sleepovers and playing together.

We are so excited for Ellie to get a home makeover therapy room! Having access to this
equipment in our home will help Ellie practice and get stronger so that she can become more independent. We believe Ellie has great potential to achieve her dreams and this is just the beginning for her. Thank you, Sunshine on a Ranney Day for making this possible.

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Photography by Marcelino Aguilar Photography

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Joseph

  • 5 Years Old

  • Spina Bifida Myelomeningocele

Joseph has always been a little Superman. Even after receiving the prenatal diagnosis of spina bifida, we couldn’t have been prepared for the challenges we were about to face. Joseph was born prematurely with a large, open hole in his spine and bravely began his life with 77 days in the NICU. He underwent ten surgeries, countless medical scans and tests, revolving doctor appointments, and multiple hospital stays, which are the routine for so many special needs children. This can be scary for a young child, but Joseph is brave beyond his years.  

Like many children with spina bifida, Joseph developed hydrocephalus, a condition that allows fluid to accumulate in the brain. This can cause brain damage from the buildup of pressure. Joseph had a shunt surgically placed in his skull as a newborn to protect his brain. The tiny tubing and valve keep the fluid that cushions the brain freely flowing. Despite the effects of hydrocephalus and an underdeveloped cerebellum, Joseph grew into a smart, funny little five-year-old boy.

For the first year and a half of his life, Joseph required 24-hour oxygen and a feeding tube for all his nutrition. By 18 months, he received his first tiny wheelchair as he is paralyzed from the waist down. He was non-verbal and used a voice-producing device until the was three and half years old. Then one day he recited the entire alphabet and hasn’t stopped talking since! Today, he only requires supplemental oxygen at night and eats by mouth on his own. He loves showing off his wheelchair “tricks,” meeting new people and learning their names. Although he has some developmental delays you will notice when you meet him, what outshines those is how earnestly he wants to be your friend. He has a strong memory for stories and loves to repeat (and repeat!)  the adventures of historical heroes he has learned about.  

“He loves showing off his wheelchair “tricks,” meeting new people, and learning their names.”

Joseph’s determination through each health challenge is growing into a resolution to be independent. His family and amazing team of therapists is doing everything they can to help him accomplish this. Unfortunately, even something as simple as a narrow doorway can thwart his efforts. That obstacle, along with a flight of stairs, means he must be carried to his bedroom. And this is just the beginning of how Joseph becomes like an infant all over again. He must be lifted to a changing station for diaper changes and all his grooming and bathing needs are fulfilled by mom and dad in a bathroom designed for those who can walk independently. 

Generous friends of the Smith family sent Joseph’s story to Sunshine on a Ranney Day and soon Joseph will have the independence and dignity he desires. The makeover of a downstairs bedroom and the transformation of a bathroom that is not accessible will provide him with the physical means to begin an independence that will stay with him his entire life. We are incredibly excited and grateful to everyone involved with this phenomenal gift.  

Just like Superman, underneath his sweet smile and friendly conversation, Joseph has strength and bravery that has kept this little guy soaring through everything life presents. Thank you to Sunshine on a Ranney Day for breaking down walls to help Joseph not just roll, but fly!

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Photography by Vicki Alsup Photography

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Reese

  • 4 Years Old

  • Acute Lymphoblastic Leukemia

I’ll never forget the pain of December 2, 2020. I was making a sales call for work and had several missed calls from my husband, Marcus. He rarely calls me repeatedly in the middle of a workday. I learned our two year old son, Reese, had a fever and small purple dots on his legs (petechia). We weren’t the kind of parents who took our kids to the doctor for every little thing, but this was different. Marcus took him to our pediatrician. They did bloodwork and found Reese’s white blood cell count was through the roof. My husband could tell by the look on the doctor’s face something was seriously wrong.

The drive from our house to Children’s Healthcare (Scottish Rite) in Atlanta for further testing, was filled with mental torture. Our minds raced, our hearts beat out of our chests, and panic sank in. We sat on a bed in a small, dimly lit room in the ER waiting to hear what was wrong with our precious boy. Marcus had stepped out to meet my mom in the parking lot since they said it could take some time. I called my dad. But just a few short minutes later, the doctor rushed in. I looked up, hoping with every ounce of my being she would say Reese was okay.

“I’m so sorry to tell you this. But we examined Reese’s blood under a microscope. And based on everything we’re seeing, your child has Leukemia.” I fell. My arms went limp, dropping my phone on the hospital bed. “No! It can’t be. Can you run more tests? Are you sure? Oh God, no!” 

“We weren’t the kind of parents who took our kids to the doctor for every little thing, but this was different.”

I sat alone feeling shattered into a million pieces, completely broken. Marcus walked in and I shared how our entire world had just been torn apart. We curled up next to Reese, holding him, caressing his cheeks, soaking the pillows with tears. I’ll never forget it. 

One year later, and our sweet boy is in remission! Praise God! He’s continuing to receive chemotherapy and takes a revolutionary medication to turn off the Philadelphia chromosome; a rare chromosome he was diagnosed with in addition to Leukemia that essentially tells his body to keep making cancer.

We thought it would be super special for Reese and his older brother, Jett, to have a playroom where they can go to take their minds off the heaviness of this season we are in. Jett has had a very hard time as he’s often felt left out and forgotten. Sometimes he even says how he wishes he had cancer too. Reese adores Jett and this would give them a special area that is all theirs.

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Photography by Niki Murphy Photography

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Brianna

  •  18 Years Old

  • Cerebral Palsy, Brain Damage, Epilepsy

Brianna “Breezy” was born on June 4, 2004.  During birth, Breezy experienced complications causing brain damage and she received a later diagnosis of cerebral palsy and epilepsy.  Breezy continues to defy odds; the doctors did not expect Breezy to live to see her first Christmas and now she is 17 years old!  Breezy has a love for music and being outdoors. She comes from a musically talented family and attends a church that has many different types of instruments.  Breezy enjoys attention and interaction with people from reading a book to simply holding hands. 

“Breezy lights up a room with her beautiful blue eyes and contagious smile.”

Breezy is nonverbal and wheelchair dependent.  Breezy has faced so many challenges throughout her 17 years of life and proves what love, prayer, and faith can do.  Breezy lights up a room with her beautiful blue eyes and contagious smile.  She continues to amaze and capture the hearts of her family, friends, church family, and community.  

Breezy is fully dependent on her family to take care of her everyday needs and an accessible bathroom and bedroom renovation will make life easier for the whole family.

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Photography by Niki Murphy Photography

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Kaitlyn

  •  12 Years Old

  • Cerebral Palsy, Epilepsy

Kaitlyn is a happy and fun-loving 10-year-old girl.  She, unfortunately, lost oxygen during her birth process and experienced seizures shortly after birth.  She had a 16 day NICU stay after birth and experiences many health and gross and fine motor challenges due to her brain injury.  She was diagnosed with Cerebral Palsy at just 8 months old and has been in weekly speech, physical and occupational therapy since just 6 months old.  She also participates in ABA therapy and intensive robotic therapy.   She is unable to use her physical voice but uses a communication device to communicate.  Kaitlyn uses a power wheelchair in the school and community settings and can walk with the support of a gait trainer in her home. 

“Kaitlyn works so hard to overcome her challenges and puts forth so much effort each and every day”

Despite this multitude of challenges, Kaitlyn lives a happy and fulfilling life.  She loves doing yoga, playing Mario Kart with an adaptive controller, and baking with her family.  She runs races with her Dad in an adaptive jogging stroller and has already completed 2 half marathons.  She loves our family beach trips to Hilton Head Island and she even does yoga on the beach!  What fun!  She is active in her church and participates in church worship and dances up a storm each week.  Kaitlyn works so hard to overcome her challenges and puts forth so much effort each and every day.  

We’re so excited for Kaitlyn to have an accessible space to give her independence and a calm place to relax after those sometimes really tough and overstimulating and overtiring days.  She is already starting to ask about makeup and becoming more interested in fashion so it will be so neat to have a space where she can learn to become more independent as she heads into her teen years soon. 

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Photography by Pear Tree Photography

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