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Ellie

  • 4 Years Old

  • Pontocerebellar Hypoplasia

Ellie was a perfectly healthy baby during prenatal check ups and Jenn (Ellie’s momma) had a wonderful pregnancy. However, the last two minutes of labor changed everything. She swallowed Meconium, got stuck in the birth canal, and had the umbilical cord wrapped around her neck. She was blue and limp when she arrived. It took two minutes to revive her and just in that amount of time, she lost oxygen to her brain causing injury to her cerebellum, which controls fine motor skills and balance. Since Ellie’s birth, her family has been learning and handling challenge after challenge.

It’s hard to believe the first year of her life they tried just about everything to make her smile or laugh but now it’s effortless!

Due to her developmental delay and strange movement disorder (later diagnosed as dystonia) her Neurologist conducted a genetic test for Pontocerebellar Hypoplasia type 2A. Soon after her first birthday in April 2019, they received the positive results. This means both parents passed the gene to Ellie causing her cerebellum and half of her brain stem to stop growing in the womb. So now, on top of her birth injury, she also has this genetic mutation.  It’s such a rare disease that doctors really don’t know a prognosis and only about 100 people have been documented having this gene. Some children pass away during childhood years, however, some have lived well into her twenties. 

What we DO know is Ellie is the happiest baby in the world! It’s hard to believe the first year of her life they tried just about everything to make her smile or laugh but now it’s effortless! She is the silliest girl and keeps everyone laughing. She loves any and all music, including the jams on Cocomelon and when her Daddy plays guitar for her! Even though she is technically “non-verbal” she definitely communicates in her own little language and is such a social butterfly. Water is at the top of her favorites because it gives her freedom and some independence. When in her special float, she is able to move freely by herself and is not dependent on help.

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Photography by Christina Elmore 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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Jason

  • 19 Years Old

  • Cerebral Palsy & Dystonia

Jason recently completed his freshman year at University of West Georgia! He was born a preemie weighing 2lb 9oz, spent 86 days in the NICU and by age one he was diagnosed with Cerebral Palsy and Dystonia. Today, Jason is wheelchair bound and uses a power wheelchair like a boss! He is completely dependent on someone to assist him with everyday life. Since he is not able to use his arms, he must be fed, but can clearly tell you that the food is too hot, salty or disgusting. So from the neck up Jason is a “typical” 17-year-old!

“…from the neck up Jason is a ‘typical’ 17-year-old!”

For Jason to take a shower, his family needs to undress him in his room and carry him through most of the house to reach the bathroom. Once in the bathroom, he uses a tub chair to shower. However, when Jason goes to camp and respite, he has a lot more independence and ability to do normal things like showering and using the restroom because of the accessibility of the bathrooms there. Because of this, he loves when he goes to camp – so we can’t wait to help him have the same feeling about his own space in his house! 

Aside from going to camp, Jason loves going to the movies with friends and family to watch Marvel movies – of which he is an avid fan! He also loves anything Anime and frequently reads Fan Fiction Anime. His favorite places to visit are New Orleans and DC, but he has dreams of going to New York City! At home, Jason’s younger sister, Junia, frequently keeps him entertained with all kinds of shenanigans.

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Photography by Niki Murphy 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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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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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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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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