Tag: 2023

Ellie

Written by Clareece Cunningham on December 8, 2022. Posted in Meet the Kids.

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

Written by Clareece Cunningham on December 8, 2022. Posted in Meet the Kids.

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

Written by Clareece Cunningham on December 8, 2022. Posted in Meet the Kids, Randall Paulson Architects.

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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Cade

Written by Joe Lane on November 28, 2022. Posted in Meet the Kids.

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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Mariah

Written by Joe Lane on May 27, 2022. Posted in Meet the Kids.

17 Years Old
Brain Tumor

In 2013 when Mariah was nine years old, she had a headache that would not go away. After several visits to various doctors, Mariah went to the emergency room at Children’s Healthcare of Atlanta. The emergency room doctor initially thought Mariah had a viral infection but ran a CT scan for confirmation. The CT scan showed a mass in Mariah’s brain which required a follow-up with a neurosurgeon. Mariah underwent brain surgery and had the tumor removed and the prognosis was positive, Mariah was expected to recover and unlikely to have any more issues.

Unfortunately, less than one year later Mariah had a regrowth of the tumor which required another surgery for removal. After the second surgery, the doctors learned that the tumor was extremely aggressive. The type of tumor is called ATRT and the chances of survival are about 50/50. The doctors explained that Mariah would be extremely sick and spend the majority of the next year in the hospital. Mariah was sick at the beginning of treatment but later in the year she was doing so well that the doctors were baffled at how well she tolerated her therapies and medications. Towards the end of Mariah‘s treatment, she had difficulty walking and increased weakness in her legs. An MRI revealed that she had extreme swelling building in her brain and it was affecting all of her motor movements. Mariah’s condition continued to worsen, she eventually lost all of her ability to move and was very close to not being able to breathe on her own. Around 2016 Mariah was using a machine to rattle her lungs so that she would not get pneumonia. She also needed help with all of her needs including going to the bathroom, getting dressed, and turning over in the night. Mariah was almost like a zombie.

“Life has recently become more challenging for our family as Mariah is growing more everyday.”

Since 2016, Mariah’s family has been on a path to help Mariah get better. The treatments that she received for her brain swelling left her with bone integrity issues as well as post-menopausal. She also needed double hip replacements and hormone replacement. She has had one hip replacement. Mariah has lived with a lot of pain and sadness as to why this has happened to her. However, God has truly used Mariah to grow her parent’s faith and to touch many lives around her in the community. Mariah continues to show signs of improvement to this day. She has not regained the ability to walk or use of her hands but she is much more alert and spunkier! Currently, Mariah attends therapies twice a week and is active in the church. She is also involved in a special-needs organization called, Extra Special People. These outlets have provided an abundance of joy for Mariah. Mariah and her parents are so thankful for their family and community. They are eager to see what the future holds for Mariah and do not think God is finished healing Mariah.

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Photography by Jennifer Boxley Photography

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John & Joseph

Written by Joe Lane on May 27, 2022. Posted in Meet the Kids.

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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Anthony Jr. & Lyric

Written by Joe Lane on January 7, 2022. Posted in Chattahoochee Tech Design Program, Meet the Kids.

14 & 6 Years Old
Quad Cerebal Palsy, Epilepsy, Autism

Anthony Jr. was born on December 15, 2005. He has cerebral palsy and epilepsy caused by brain-damaged experienced during a complicated and difficult birth. Anthony is non-verbal and wheelchair-dependent. He is a vibrant child and loves his family. Anthony enjoys music which is no surprise since he comes from a musical family.

Despite all of Anthony Jr.’s challenges he can communicate and enjoys a good laugh. He shows a love for life and what it means to fully live in the moment. Anthony Jr.’s love for life also keeps his entire family going.

“He is always the energy in the room that encourages others to be ok in moments of darkness.”

Lyric, younger brother to Anthony Jr., was born on December 11, 2015. Lyric was diagnosed with autism in 2017. He is an extremely intelligent little boy and continues to amaze everyone with what he knows. He enjoys music just like his older brother, Anthony Jr. Lyric also enjoys being outdoors and interacting with people.

Lyric faces challenges every day and he works really hard to do his best. He is always the energy in the room that encourages others to be ok in moments of darkness. He is such a loving little boy just like Anthony Jr. Lyric tries his hardest to help his big brother. He watches others take care of Anthony Jr. and attempts to mimic their actions.

Lyric is truly what helps Anthony Jr. continue to smile! Lyric and Anthony Jr. represent brotherly love like no others!