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Juliana

  • 15 Years Old

  • Cerebral Palsy, Hearing Loss, Retinopathy

Juliana was born at 24 weeks weighing 1lb 6oz.  She survived on prolonged ventilator therapy and IV antibiotics for 5 months.  During her stay at the NICU she experienced numerous infections, a surgery for necrotizing enteric colitis, holosystolic murmur, patent ductus atreiosus and neonatal hypothyroidism.  This jovial warrior fought hard and survived all of these treacherous tribulations. 

Later, she was diagnosed with Cerebral Palsy, sensorineural hearing loss in the right ear and retinopathy of prematurity.  She has endured numerous surgeries including eye surgery and leg lengthening surgery. 

“This lively teenager is a miracle who has never allowed her disability to limit her from enjoying life.”

She has been in physical and occupational therapy for fifteen years and continues to focus on her functional targets.  She works diligently towards becoming independent.  She uses a walker in school and a wheelchair for long distances.  She has recently begun to ambulate more independently by holding on to furniture and walking.  This is a cherished sight in her home!  Juliana enjoys therapeutic horseback riding, buddy baseball and summer camp.  

This lively teenager is a miracle who has never allowed her disability to limit her from enjoying life.  She has radiant smile that illuminates the world around her. It was this amazing smile that landed her the role of being an extra in the movie Mother’s Day and also was in the video for TV Teacher together with her sisters.

As any typical teenager, Juliana fights with her sisters over the TV remote, loves technology and spends her time listening to music and watching videos on You-Tube.  She also loves using apps on her iPhone and tablet.

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Photography by Kristi Weaver Photography

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Lexy

  • 11 Years Old

  • Spinal Muscular Dystrophy Type 2 and Hypotonia

Meet Alexas.  Her adorable nickname is Lexy, which fits her well.  She is bright, cheerful and is definitely a take charge kind of girl.  She is a ray of sunshine, not only putting a smile on the faces of those she meets, but also bringing sunshine and hope to others with Muscular Dystrophy.  

Lexy was born in 2007.  When she turned one, her mom realized that she was not progressing like a typical toddler and soon after, she had multiple medical exams that led to a devastating diagnosis of Spinal Muscular Dystrophy Type 2.  This disorder has brought with it medical complications such as pneumonia, low blood sugar, as well as multiple medications, several complex surgeries and the inability to walk. Lexy relies on her wheelchair to get around and machines to help her breathe and clear her lungs.

She is a ray of sunshine, not only putting a smile on the faces of those she meets, but also bringing sunshine and hope to others with Muscular Dystrophy. ” 

Although living with MD is challenging, she perseveres and shines as a leader.  She has served as a local Goodwill Ambassador for Muscular Dystrophy for the past 5 years. In 2015 she was nominated the state Goodwill Ambassador for Muscular Dystrophy. She and her team, Alexas’s Army, have participated in the Walk for MDA five years in a row in which her efforts have raised a significant amount of money for the MDA.  She and her mom promote awareness through speeches and networking at this event and within their community.

 

Although she sometimes questions why she has to live with MD, she has an amazing attitude and inspiring positivity.  Her will to survive and desire to contribute to the good of others is contagious.  This natural born leader loves going to school and adores art.  Her favorite thing in the world is American Girl Dolls.  

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Photography by Birchfield Photography

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Ethan

  • 9 Years Old

  • Cerebral Palsy and Spastic Diplegia

We would like to introduce our 9 year old son Ethan Carson. He is the most funloving, playful kid you will ever meet and asks everyone he encounters, Hey, How are you?He has the most infectious smile and some of his favorite things are race cars, the Georgia Bulldogs, bouncy houses and balls, swimming, video games, music (esp. Luke Bryan!), and the most important of all his iPad! Ethan is also obsessed with watching Fixer Upper and Flip or Flop on HGTVR and talks constantly about beamson the ceiling, lights and fans

While the 9 month pregnancy was a model, all of the troubles that Ethan encountered were during his birth. After a very long delivery, Ethan got stuck in the birth canal, and went without oxygen for a period of time. He spent two days in NICU with a one lung only working at 13%. He was such a fighter though and eventually came through and we brought him home after a week long stay in the hospital. It was not until about 8 months old that we discovered Ethan was not able to do some of the normal things that children his age should be doing. Things like sitting up, crawling, tummy time, etc. were not in line with other babies his age. We then set out to find out what was going on and began our journey with the many wonderful specialists and doctors at Children’s Healthcare of Atlanta. After several seizures, numerous EKG’s, MRI’s, and respiratory issues, at the age two, Ethan was diagnosed with Cerebral Palsy (CP) and the more specific form be Spastic Diplegia. The form of CP and Spasticity Ethan has is a neuromuscular condition of hypertonia manifested as an especially high and constant stiffnessor tightnessin the muscles of the lower extremities. This form of CP and Spasticity can be quite crippling in that it causes some major abilities in his physical movement and obvious issues with just daytoday functions such as dressing, bathing, brushing teeth, combing hair, along with speech delay

He is the most funloving, playful kid you will ever meet and asks everyone he encounters, ‘Hey, How are you?’ 

Ethan has not let his disability become a crutch for himself. In fact, he does not even know that he has this ailment; he crawls, walks in his Kaye walker, and wheels himself in his wheelchair throughout his day as if he was a normal boy not letting his disability define him. He loves going to school each day and of course the School Bus” ride is a highlight that he looks forward too on a daily basis. His favorite meals are pancakes (all day, every day), pizza with chocolate milk and his Mommy’s spaghetti

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Photography by Nicole W Photography

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Ally

  • 4 Years Old

  • B-cell ALL Leukemia

This sassy, pint-sized cheerleader is packed with larger than life girl power.  Ally cheers for the Charlton County Rebels and Kyle Bush; she is a huge NASCAR fan. Ally is also a great fashionista and loves to wear Matilda James, which is chemo friendly clothing.  That’s right, this gorgeous little pumpkin is currently battling cancer.  

Ally was diagnosed with B-cell ALL Leukemia on May 19, 2016, the day before her 3rd birthday. She is considered “high risk” because of how high her white blood cell count was when they diagnosed her. It was bruising all over her body that prompted her parents to bring her to the hospital.  It was a good thing that her body gave them cues to follow, because had they waited, the results would have been devastating.  Doctors said that she would have had uncontrollable bleeding and that her tiny body was working so hard to fight the cancer that her heart would have given out if she wasn’t treated timely. 

“This sassy, pint-sized cheerleader is packed with larger than life girl power.”

Luckily, they caught it at this very critical point and she had a high priority surgery to place her port and she was receiving chemo within 16 hours of being diagnosed. To date, Ally has endured 28 blood transfusions, 29 bags of platelets, 34 lumbar punctures and 2 bone marrow aspirations. She has spent 113 nights in the hospital as well as 42 days in the clinic at the hospital for chemo. Being the intense fighter that she is, she has also survived 4 life threatening infections in her blood stream while receiving chemo.

 

Although she is tough and keeps on fighting, the chemo has taken its toll on her causing her difficulty being able to walk because her legs are so weak. This has been the hardest thing for her because she desperately wants to keep up with her brother, Jay. She now wears braces to keep her feet aligned with her legs so that she doesn’t trip over her own feet. Her will to beat this horrible disease and her passion for the greatest things in life have kept her family strong.  Leaning on that strength and focusing on her beautiful future will get them through as she will continue this battle through the remainder of her treatment, which is scheduled through September 2018.  

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Photography by Niki Murphy Photography

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