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Tag: 2018


  • 4 Years Old

  • Retinoblastoma in right eye

This precious girl with the sweet smile and darling little curls is Jocelyn. On her third birthday, her parents noticed what appeared to be a glare in her right eye. They thought maybe they were imagining it, but both saw it and knew they needed to get her to the pediatrician. The pediatrician referred them to The Thomas Eye Group for a comprehensive examination. They were quickly told that there were atypical cells in her eye and that she needed to see a specialist right away. After seeing the specialist, they were told she had a mass in her eye. They referred her to Dr. Hubbard who is well known for retinal care. After this third examination, they finally had a diagnosis; retinoblastoma. Cancer. This diagnosis was devastating to say the least. They also found that she had a tumor on her pineal gland and one large tumor with severe seeding within the soft tissue of her eye. Heartbroken and scared, her parents sought for answers as to what would come next. What would the treatment plan be? Would they have to remove her eye? After much consideration, they decided to fight the battle to try to save her eye. The plan was six months of chemo therapy through a port. She endured chemo treatments twice per month as well as eye exams under anesthesia. Chemo therapy was tough on her petite body. Not only did she lose her hair, but also her energy and the joys of childhood. The treatment was working. They found that the cancer was controlled and the tumor on the pineal gland was shrinking.

Chemo therapy was tough on her petite body. Not only did she lose her hair, but also her energy and the joys of childhood.

However, within two short months it returned and was more aggressive. Dr. Hubbard decided that she needed intra-arterial chemo. They placed Jocelyn under anesthesia again for this procedure that placed a small tube through her thigh, up through her heart to right behind her eye. This allowed for the chemo to be delivered directly to her eye via her own blood flow. Due to an adverse reaction that only happens in 0.01% of kids, Jocelyn lost her vision and her eye swelled significantly. This swelling lasted four months and they were unsure of what the course of action would be. It only took one month for the cancer to return and it spread rapidly. The new plan of treatment was injections of chemo directly into the eye while she was under anesthesia. At first it worked, but after only three treatments they found numerous tiny tumors referred to as seeds were spreading throughout her eye. The doctor reported that it was so severe that it could possibly spread to other parts of the body. The most significant concern was that it could eventually spread to the brain via the optic nerve. They continued to fight to save her eye with laser treatments and cryotherapy, but ultimately to save her life and spare her from losing vision in her left eye, they decided it was time to remove the eye itself. This decision was the most difficult of all. Knowing that this could affect her confidence later in life, they struggled with the thought of her living a fulfilled life without her right eye. They imagined her on her prom night wondering why she had to endure this. However, they quickly concluded that she already lost her vision and was at risk of losing her life. The wisest decision was to remove the eye to save her life. They fought hard to try to save the eye and attempted every available option; but, saving her beautifully cherished life was the only choice in the end. As they look toward a bright future, they look forward to her prom night where she will shine radiantly; and, they can bask in the greatness of all of the wonderful moments they share. Not only did they celebrate Jocelyn and her dream bedroom makeover, her reveal was on Veterans Day (observed) 2018. Jocelyn’s father is a proud soldier in the United States Marine Corps. From Jocelyn’s dad: “I am currently a Gunnery Sergeant in the United States Marine Corps. I’ve served in the reserves for 18.5 years. During this time my greatest honor has been able to serve with the finest Marines a person could hope to serve with. We were never perfect, but we always made an incredible team. I was deployed twice to Iraq. The first time, I withdrew from my college classes and had the privilege to serve with a unit that earned the Presidential Citation award. I was on-the-spot meritorious promoted to Cpl after my first deployment. I was deployed again and fell in with another incredible unit. We always meet mission and improved the area that we were in. We were awarded the Navy Unit Citation. I was awarded a combat meritorious promotion to Staff Sergeant during this time. I have been fortunate enough to serve on many funeral honors in every position; to playing the bugle, firing squad member, squad leader, and flag presenter…It has been a humbling experience to be there when our nation’s heroes are laid to rest for the final time…I’ve also been awarded the Navy and Marine Corps. Commendation Medal for my time while serving in a Supply Chief status and my outstanding performance in carrying out the functions and duties of Logistical Chief at the same time. I have earned a Brown Belt in the Marine Corps. Martial Arts Program (MCMAP). I’ve also earned my sixth award for the Selected Marine Corps. Reserve Medal. During the times of deployment the Global War On Terrorism Expeditionary Medal, Two Armed Forces Reserve Medal, Global War On Terrorism Service Medal, Two Sea Service Deployment Ribbons, and Iraq Campaign Medal with two stars was awarded. In addition to these I also have been awarded 4 Certificates of Commendations, 3 Letters of appreciation, and one Meritorious Mast.” Sunshine on a Ranney Day is proud to have designed an amazing dream room makeover specifically for Jocelyn.

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Photography by Dinah Sutton Photography

Photography by Dinah Sutton Photography
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  • 5 Years Old

  • Leukemia

This dainty beauty is Liliana. She is full of life and joy. Her smile is contagious and melts the hearts of those who work with her. She loves Disney princesses, dancing, singing, swimming and playing with her favorite toys. She enjoys going to school and aspires to be a nurse and a rock-star when she grows up. Luckily for the world, rock-stars and nurses are in high demand!

At the young age of 5, Liliana has fought more battles than most of us endure through adulthood.  When she was three-years-old, her parents were hit with the devastating news that she had cancer. The moment surreal when a team of doctors uttered that horrific word. Cancer. An Oncologist gave her the official diagnosis of B-cell Acute Lymphoblastic Leukemia. It was in the spring of 2016 when she began to become more pale and weak, oftentimes not even able to walk the distance from the driveway to the front door without asking to be carried. She was still an upbeat and happy child, but was not as active during normal play time with Emma her older sister. She had developed a slight limp without any known traumatic injury. A few days prior to her diagnosis, she had two spontaneous nose bleeds which led to a visit with the pediatrician and then urgently to the ER.

The first month was extremely difficult; new chemotherapy drugs were administered via a surgically implanted port in her chest, spine, or mouth. The first phase included twice daily steroids which completely changed her physically and emotionally. The steroids caused wild emotional swings and physically changed her appearance so drastically that she was unrecognizable. She lost so much muscle in her legs, that she was not able to walk for a few weeks. She progressed through the protocol like a champ and did not complain a lot, even when receiving meds that caused horrible side effects. She was hospitalized right before her birthday (Christmas day) that first year for mucositis, an inflammation causing ulcers on the mucosal surfaces from her mouth all the way through her intestinal system. She was not able to eat for ten days, but was released from the hospital just before her birthday!  She adjusted to having a bald head with confidence and little concern of how people would react to her appearance. As a Georgia born girl, her family called her “Peach” when some fuzz began to appear. An adoring nickname that suits her well.

She has shown tremendous bravery and handled all that she has had to go through with a hop in her step and a song on her lips.

The decision to allow Liliana to attend school was not taken lightly. Fear of illness compromising her immune system delayed her attendance for one year. Onocologists encouraged her attendance so she could experience as normal a life as possible. The transition was successful. She enjoyed attending school, connected with teachers and friends and loved learning new things. She often missed school due to illness or doctor’s visits. At times, she stayed home to avoid rampant viruses such as the flu when they are circulating the school. 

The second year into treatment, Liliana began to experience skin rashes, infections and abscesses due to her suppressed immune system. Several months into her maintenance phase, the Oncologists realized that her liver was getting harmed more severely than most kids on similar doses of chemotherapy. Her body metabolized the medications differently causing a severe hepatitis and gallbladder issues. She struggled with severe abdominal pain and vomiting for several weeks before they could come to a conclusion as to what to do. They added another drug to her regimen to hopefully reduce the toxicity of the one drug, but it also had its share of side effects. Her liver enzymes did improve, but her platelets and hemoglobin dropped so severely, that they had to hold her medication for one to two weeks of every four week cycle.

Liliana loves the doctors, nurses and staff at the Aflac Clinic and eagerly looks forward to their smiling faces, despite her fear of the pokes and prodding. She has shown tremendous bravery and handled all that she has had to go through with a hop in her step and a song on her lips. At her young age, all she knows is a life of cancer treatments, hospital visits, and daily medications. She knows that she needs to avoid germs and wear a mask at times. She does not think ahead to the distant future, but enjoys the here and now, which is evident to all who come in contact with her.

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Photography by Dinah Sutton Photography


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  • 18 Years Old

  • Lennox-Gastaut Syndrome (LGS), Seizures, Apraxia

Caleb, the tall and handsome guy pictured here, is in the 11th grade.  He exudes bravery and strength and enjoys being active.  He loves to snorkel, kayak and hike.  He is also a devout sports fan.  He loves to watch all sports and imitates the players’ actions.  His favorite part of football is kicking.  He loves to help and automatically becomes a friend to anyone who meets him.  He thinks his smile will get him through life and he might be right; he has an amazing smile. 

Before Caleb was born it was discovered that he had bilateral clubbed feet.  After birth, doctors also discovered that he had a chromosome disorder.  At three days old, Caleb had his first of many sets of casts put on to help straighten the feet.  After a few castings, Caleb had his first foot surgery at three months old.  Soon after that he started experiencing infantile spasms, a form of epilepsy.  Over the next seven years Caleb endured four more foot surgeries and countless EEGs.  He tried several different seizure medications in attempts to manage his seizures.  He experiences a variety of types of seizures and the patterns change frequently.  After a video EEG it was determined that he had Lennox-Gastaut Syndrome (LGS).  LGS is a rare syndrome in which patients have multiple seizure types along with developmental delays.  LGS is treatment-resistant.  At eight years of age, Caleb was given a vagal nerve stimulator (VNS).  This device was life changing for him. 

Caleb has endured many broken bones and a major reconstructive surgery on his feet.  This reconstruction performed at age fifteen was wildly successful and he now has straight feet.  He still wears AFOs for support, but he always rolls with it. 

He loves to help and automatically becomes a friend to anyone who meets him.  He thinks his smile will get him through life and he might be right; he has an amazing smile. 

In March, Caleb traveled to Orlando for Epilepsy Day and an LGS walk.  He walked over 2 kilometers! This was quite exciting, but the excitement soon turned to fear.  On the way home, his oxygen levels dropped below normal and he ended up at an ER in south Georgia.  He was transported back to Atlanta and spent the next 15 days in the ICU and then 20 days of extensive rehab.  During this hospitalization, it was determined that Caleb silently aspirates when he eats and drinks.  After eighteen years of eating by mouth Caleb now had to be fed via a tube to reduce the risk of aspiration and pneumonia.  He has handled this very well.  In addition, he also has respiratory treatments that must be performed daily keep his lungs clear. 

Despite the ailments he continually faces, Caleb approaches life with positivity and a can-do attitude.  He never lets his challenges keep him from enjoying new adventures and a fulfilled life.  

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Photography by Niki Murphy Photography


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  • 9 Years Old

  • Synovial Sarcoma

Mason is a rare gem of a kid with a very rare form cancer. He is unique, loving, and has always been an old soul, wise beyond his years. He enjoys spending time with his 5 siblings (Mason is the 4th of 6 kids), his parents, and his best friend-a puppy named Mickey. Mason’s interests are vast and captivating,  ranging from listening to the Beatles to exploring vintage cars to building every Star Wars Lego set he can find with his brothers and mom. 

Mason was diagnosed with Synovial Sarcoma just three weeks after his 9th birthday in July of 2017, making him only the 49th case of this form of cancer in a child nine years of age or younger. After the diagnosis of his primary tumor and with the rarity of this form of cancer, Mason and his parents travelled to several out-of-state high volume Sarcoma centers in search of the best Sarcoma team and treatment plan to save his life. Having never been on a plane before, Mason took nine flights within the six weeks following his diagnosis.  Often he and his mom were alone in hotels and hospital rooms hundreds of miles away from the rest of his family. Mason underwent a surgical lung biopsy out of state that unfortunately was unsuccessful and resulted in the hemorrhage of his lung. The following week, he endured a surgical sentinel node biopsy to further assess the possibility of metastasis. During the short time lapse between when Mason’s tumor was initially seen on MRI and while he was being staged and seeking a treatment plan, a follow up MRI showed that Mason’s tumor had increased in volume by 65%. Within days of receiving those results, he and his family traveled to Boston to meet an experienced Sarcoma team. It was determined that this team was the most qualified team with the best plan to effectively treat Mason’s cancer with the best chance at a good quality of life. Later that week, he had his fourth surgery since being diagnosed and his port was put in. Within a few hours of that surgery, he began the first round of the very strong neoadjuvent chemotherapy regimen. The side effects of chemo took him out of school, away from his friends, and often on isolation from even his siblings as they left him vulnerable to possibly life-threatening infections.

He is unique, loving, and has always been an old soul, wise beyond his years.

Chemotherapy took a significant toll on his fragile body.  Nearly every round of chemo he underwent resulted in unplanned trips to the ER and additional hospital admissions due to serious illnesses and complications. During the time he was on chemo, Mason missed many fun events and social activities including camp, birthday parties, trick or treating on Halloween, holiday celebrations and playing on his school’s basketball team. This was disappointing, but he never let it get him down and continued to fight like a true warrior.

After several months of chemo in Atlanta, Mason and his mom returned to Boston, away from the rest of their family, for his big surgery. Boston became their home for the month of November as Mason underwent extensive tumor excision surgery which included the rebuilding of his medial knee and part of his leg to remove his tumor. After surgery, Mason was confined to an immobilizing leg brace and used a wheelchair to get around. He began extensive physical therapy and vestibular rehabilitation to regain balance and the use of his leg. Mason was determined to stand, walk, and regain the mobility he had lost. He worked hard and pushed through the pain and challenges he endured, including having a non-healing surgical wound battling recurrent staph infections.  Mason has rose above the many setbacks faced due to his unwavering determination to regain his mobility.  The surgical wound took 4.5 months to heal completely after his tumor excision surgery.

After Mason completed his chemotherapy, his family adopted his new best friend and faithful companion, a Boston Terrier puppy named Mickey. Mason longed for a puppy for several years.  Given the miraculous treatment he received in Boston, the city held special meaning to Mason.  As a result, he thought it was quite fitting to choose a Boston Terrier.  The bond between Mickey and Mason in heartwarming and unbreakable!

Although Mason’s progress has exceeded his doctors’ expectations in many ways, his future and prognosis remain uncertain. Each day is truly a blessing and he and his family celebrate every victory!

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Photography by Niki Murphy Photography


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  • 4 Years Old

  •  Down Syndrome, Trisomy 21, remission from Acute Myeloid Leukemia

Lyric was born as the family’s third child and the only girl.  They were overflowing with excitement as they awaited the arrival of their beautiful daughter.  They planned to welcome her into the world with an exquisite homecoming celebration.   Her father was home decorating with welcome signs and balloons.  While her mother was still at the hospital with baby Lyric doctors revealed that they suspected that Lyric had Trisomy 21 which is more commonly known as Down Syndrome.  Tests soon confirmed their suspicion.  This shocking news was absolutely devastating and her parents were riddled with fear.  Not knowing very much about Down Syndrome, they began to educate themselves so that they could support her and provide her the best possible care.  They looked towards experts and read research regarding how to care for a child with Down Syndrome.  Little did they know that Lyric would be the one teaching them.


As they began to care for Lyric, her, beautiful spirit was like a light shining though their darkest fears and loving her was so easy.  Her radiant smile and pure heart touch the souls of those who meet her.  She brought their family such love and laughter, they knew that they were now complete.

As they began to care for Lyric, her, beautiful spirit was like a light shining though their darkest fears and loving her was so easy.

Lyric began to blossom into a healthy, vibrant toddler.  Given the possibility of enduring additional complications often associated with Down Syndrome, Lyric was relatively healthy and they felt very blessed. She had not even had an ear infection until she was two. The results of routine bloodwork at 2 ½ years old brought them unexpected yet earth shattering news.  Lyric had Acute Myeloid Leukemia.  It seemed so surreal.  She appeared to be perfectly healthy and thriving.


One month after being diagnosed, Lyric was admitted into Scottish Rite at the Aflac Cancer Center where she started her first of five rounds of chemotherapy. She spent twenty-six grueling days in the hospital during her first induction with many ups and downs.  Despite the pain and fatigue, Lyric amazed everyone with her strength and determination.  She fought with all of her being and her cheerful nature remained steadfast through it all.  When they tested her bone marrow at the conclusion of the first round of chemo, there were no detectable cancer cells! This was the most wonderful news and they were overcome with joy and gratitude.  Although the treatment was working, she still had to endure four more rounds of chemotherapy.  The effects were tough on her precious little body.  When her final treatment was complete, she had completed 720 unrelenting hours of chemotherapy with the goal of permanently eradicating the cancer.  Luckily, treatment was successful.  Her parents had never heard a sweeter sound than hearing her ring that bell to indicate that her treatment was complete and she was once again healthy!


Her parents were ecstatic to be able to take their perfectly healthy beautiful girl home.  Every moment they spend together is a moment they cherish.  Lyric is a rock star who doesn’t let Down Syndrome or cancer define her. Lyric has inspired many, but most of all her parents.  They are proud to share that Lyric has enriched their lives far more than words could ever express.

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Photography by Nicole Photography


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  • 15 Years Old

  • Schizencephaly, a form of cerebral palsy

This beautiful young lady is Angel.  Angel is a vibrant eighth grader who is always smiling and is quite the social butterfly.  Those who know her well say she has never met a stranger and loves socializing at school and in the community. 

This cheerful fifteen-year old is the middle child to two other siblings, her older sister    Brianna (19) and her younger brother Eddie (12).  Brianna and Eddie play a very big part in Angel’s life as they help her parents meet her every need.  Angel reciprocated the love, supporting her older sister in cheerleading and her brother through both football and baseball seasons.

Angel is a vibrant eighth grader who is always smiling and is quite the social butterfly.

Angel was born with Schizencephaly, which is a rare congenital brain malformation in which abnormal clefts form in the cerebral hemisphere.  Schizencephaly is categorized as a developmental birth defect affecting the left hemisphere of the brain leading to impairment of speech, mobility and development.  Angel is partially paralyzed on her left side.  She is wheelchair bound and needs full assistance to participate in activities of daily living such as getting dressed, bathing and transitioning from the chair to the bed.  the demands of caring for her become more and more physically challenging as she grows and taking care of her requires all hands on deck.  Her family considers it a privilege to care for her and enjoy seeing the dazzling smiles she gives them in return.

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Photography by Dinah Sutton Photography


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  • 4 Years Old

  • Aicardi Syndrome

It is the little things that make life so sweet! This sweet little one is Lainey.  She is full of big love and a strong will.  Lainey recently endured spinal surgery so she can lift her head and to create enough room for her lungs to breathe.  Sweet Lainey was born on May 16, 2013.  Before birth her parents were told that she had a slight curve in her spine and one day would require surgery, but that was the only imperfection the perinatal specialists found.

Lainey was born via cesarean several weeks early and everything seemed to be great.  What blissful joy her parents felt as they held her in their arms.  They had an amazing first night of precious baby cuddles.

The next morning doctors rushed her to the NICU for difficulty breathing and to examine her eyes.  When she was born, they thought that her left eye was just swollen, but it actually had never fully developed.   Doctors tested her for genetic disorders and they were all clear.  Her parents were advised to see an eye doctor and a neurologist at her first birthday.

At 3 1/2 months old they noticed the onset of jerking movements.  They continued to get worse each day and they took her to the hospital.  After an MRI, the doctors revealed Lainey had Aicardi Syndrome.  

This sweet little one is Lainey.  She is full of big love and a strong will.”

Aicardi Syndrome is a very rare syndrome that primarily affects girls and is characterized by an absent or partial corpus collosum.  As the corpus collosum is responsible for connecting the signals between the left and right brain, it is accompanied by developmental delays, visual deficits, spinal anomalies and respiratory complications.

Lainey continued to have seizures which were treated with medication.  Although this does not eliminate them, medications can help minimize them. She also began therapy, seeing specialists and taking cannabis oil to reduce her pain and seizures.  She began to thrive and everyone was thrilled with the positive outcomes.  

Treatment was successful until a severe infection at the age of two exacerbated her seizures.  This affected her ability to function, she lost all of her mobility and she began to aspirate on foods and liquids.  As a result, she was provided with tube feedings to give her body strength again.  However, multiple infections followed and she ended up in the PICU clinging to life on an oscillator.  After 19 days, she pulled through and got to go home for Christmas.  This was miraculous and brought great joy to the family.  Lainey is very susceptible to germs and must stay away from large crowds to avoid significant illness.

The journey ahead promises uncertainty, but one thing is certain: treasuring every moment cuddling this sweet girl and seeing her gorgeous smile is all that matters.

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Sweet Life Photography by Kim


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  • 15 Years Old

  • Cerebral Palsy, motor control issues

Georgia was born on July 26th, 2002 in Ashville, NC at 31 weeks and she weighed just 3lbs 14oz.  It was November before she was ready to leave the hospital.  Shortly after she was born she was diagnosed with Cerebral Palsy and the doctor said she would probably never walk. Georgia had great determination and worked hard and started walking at 2 years old.  She had a miniature shopping cart that she used to hold herself up and walk with and she placed her toys in the cart and pushed it all over the house.  As she learned to walk, her family would sing  “Just put one foot in front of the other” to her.

At the age of 4, doctors decided to try tendon lengthening surgery on her legs.  Unfortunately, it was a devastating set back and it was two years before she walked again.  Using her great drive and determination, Georgia eventually walked thru the house using only the walls to support her, but she suffered a fall and twisted her knee.  Now she must have assistance to walk anywhere whether it is using her walker or with the help of her Paw Paw.

Each day is a challenge for her to stand and walk, but with her drive and determination, her family is sure she will be back up and walking soon.

Georgia is a very outgoing person that makes friends easily and she has the kind of smile that lights up a room when she enters it.  Growing up her favorite movies included Barbie and all the Olson Twins and she loved playing with dolls.  Now she is into her cat Molly Star who loves to come in her room to play and sleep on her bed.

Georgia started high school this year but it was rough because her classes where on opposite sides of the school.  Due to a more recent fall, she is on the Homebound program and the teacher comes to her three times a week.  It is unclear when Georgia will be able to return to school.

Georgia’s family has been blessed by her coming into their lives and thank God for her everyday.  One of her future goals is to learn to drive.  She likes watching and posting videos on You Tube and other streaming shows.  Each day is a challenge for her to stand and walk, but with her drive and determination, her family is sure she will be back up and walking soon.

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Photography by Nicole Bryant


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  • 11 Years Old

  • Cystic Fibrosis

Even before she was conceived, her parents prayed for and anticipated the arrival of a sweet baby girl. Their wish was that one day they would be blessed with a little girl and her name would be Breanna Noel Blackburn. The name Breanna means “to be strong” and Noel means “to be born” so it was perfectly fitting.  Little did they know how fitting it would be. 


Breanna’s parents were thrilled when they found out they were expecting.  Knowing that there was a history of cystic fibrosis in the family, they made sure to take precautions and be prepared.  At twelve weeks gestation they had genetic testing done and it revealed that Breanna did in fact have Cystic Fibrosis.  Although they were prepared, it was still heartbreaking news. Cystic fibrosis is a genetic lung disease that causes thick sticky mucus to build up in the lungs, digestive tract and other parts of the body making it difficult to breathe.  It can also affect other organs.


At birth, Breanna needed enzymes to help her digest her food as she could not tolerate the fat in the milk.  This caused her to cry incessantly from the unbearable pain it caused her. Thankfully the CF Center was prepared and got her on the medication she needed to be able to digest it properly and what a difference it made! She went from crying non stop from sunup to sundown to eating and napping like a happy little baby.

Breanna feels more at peace by the ocean and if she had her way, she’d be a mermaid.

Life with cystic fibrosis hasn’t been easy.  Breanna has endured many admissions to Children’s Hospital of Atlanta over the years since she was born to treat lung exacerbations, chronic sinusitis infections, endure seven surgeries on her sinuses alone, removing polyps and infection.  A typical hospital stay for Breanna includes a strict schedule of respiratory therapy, IV medications and physical therapy.  Physical therapy in the hospital gym is a crucial part of her recovery as the more active she is the more clear she can keep her lungs which helps her to regain strength.  In addition to the typical symptoms that come with CF, Breanna suffers significant joint and muscle pain on a daily basis.  The pain is so intense that it nearly cripples her at times.  On a daily basis, Breanna requires twenty pills and two treatments that include three inhaled antibiotics and percussion therapy to clear her airway. Despite this, she does not let CF define her or places limits on what she can achieve.


Breanna loves the ocean!  She feels like she can breathe better when she is near it.  The sea can be beautifully calming, yet invigorating.  Breanna feels more at peace by the ocean and if she had her way, she’d be a mermaid.  Swimming is also a form of therapy for Breanna as it feels really good on her joints and muscles.  There is nothing more special than nightly walks on the beach, watching her sing and dance along the shoreline.  For those few moments, there is not a care in the world.  Breanna and her family treasure those moments deeply wishing they could last forever.


When she can’t be near the shore Breanna loves to be outside in nature.  She has a huge heart for animals and her greatest wish since she was four years old is to be a veterinarian when she grows up.  She dreams of being able to save every hurt or injured creature in the world.  Hopes and dreams don’t stop because of CF, it just makes everything in her world much more important.  Breanna’s family finds new hope on the horizon as there is a new medication that has recently been approved for Breanna’s age group by the FDA and they expect that it will do great things for Breanna!

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Photography by Niki Murphy Photography


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  • 4 Years Old

  • PTHS – Pitt Hopkins Syndrome

This tiny diva is Harper Grace.  Harper’s gorgeous smile and contagious laugh can truly light up a room.  Although she isn’t able to communicate verbally, it’s amazing how much she can tell us with just a look.  Just by being around her, you can tell that she may be tiny, but she has a big heart and big purpose.

After a fairly uneventful twin pregnancy, Harper and her brother Nolan were born on May 31, 2015.  At around a year of age, while her brother was meeting his milestones, Harper was falling further and further behind.  After going through several rounds of tests, a neurologist diagnosed Harper with Pitt Hopkins Syndrome (PTHS), which is a rare genetic disorder affecting a specific gene in chromosome 18, called TCF4.  There are roughly only 700 diagnosed cases worldwide.  PTHS is characterized by extreme developmental delay, gastrointestinal issues and a lack of speech. 

Harper’s gorgeous smile and contagious laugh can truly light up a room.  Although she isn’t able to communicate verbally, it’s amazing how much she can tell us with just a look.

Harper is four and is striving to achieve developmental milestones.  Because of her developmental delays and motor planning issues, she is nonverbal but is striving to learn how to walk. She participates in speech, occupational, physical and hippotherapy where she is learning to accomplish independent movement and is using an augmentative communication device to express her needs and thoughts. Harper has little body awareness and doesn’t have the necessary protective instincts to help keep herself safe when she’s playing and sleeping. 

Harper, along with her twin brother, has a 2 year old little sister, Mia. Harper is in special needs pre-K at Whitlow Elementary and loves school and seeing her friends and teachers.  She’s a very social little girl, who likes to swing and swim and play with toys that are musical and light up.  She adores music and watching movies with a great soundtrack!

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Photography by Kristi Weaver Photography


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