Meet the Kids Archives - Page 8 of 11 - Sunshine on a Ranney Day

Christian V

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

16 Years Old
Cerebral Palsy

This handsome fellow is the next recipient of a dream makeover from Sunshine on a Ranney Day. Christian is a gregarious 16-year old boy with Cerebral Palsy who dreams of being a DJ when he grows up. Just hours after having his wisdom teeth removed, Christian was on the air at the Ryan Seacrest Studio at CHOA Egleston, interviewing children awaiting surgery. Smart and witty, he charmed his guests with unexpected bits of well-placed humor. Christian is social, craves engagement and loves lifting others up. His middle school football coach saw a spark in him and invited him to join the team as an inspirational sideline coach. Christian’s positive attitude was contagious and earned him the coveted Heart of the Lion award given for courage in the face of stiff odds. By Christian’s eighth-grade year, the coach renamed the award after its inspirational recipient. Christian will return each fall to hand out the honor to a deserving athlete and make a speech during the football banquet.

Christian is a gregarious 16-year old boy with Cerebral Palsy who dreams of being a DJ when he grows up.

Christian was born prematurely by emergency c-section and spent 32-days in the NICU. Eight months later, after failing to meet developmental milestones, he was diagnosed with Cerebral Palsy. At three years old, he received his first wheelchair, entered pre-school and learned to speak. This is when his personality began to emerge. He has continued to thrive and grow despite his disability, which he says he doesn’t notice all that much. Now that he is 5 foot 2 and one hundred pounds, with a 250-pound wheelchair, caring for him in a traditional sized bathroom and narrow bedroom doors has become a difficult challenge. With a bathroom remodel and ramp installation, Sunshine on a Ranney Day hopes to keep his dream alive and help him achieve his goals while helping his family continue to care for him in his home. We hope that you will join us in making this project become a reality.

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Photography by Kristy Weaver Photography

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Elizabeth

Written by kbAdmin on June 26, 2021. Posted in Meet the Kids.

17 Years Old
Tranverse Myelitis

This gorgeous young lady with an inspirational smile is Elizabeth. Until the evening of Friday, February 17, 2017, Elizabeth was a healthy, social, active teenager who played Lacrosse. Her world was turned upside down that evening and has not been the same since. Elizabeth noticed a weird feeling and felt pain in her legs. Within a few hours she was paralyzed from the waist down and has not taken a step beyond that moment. Her condition was determined to be Transverse Myelitis, which is a rare neurological disorder. On top of adjusting to being in a wheelchair full time, Elizabeth suffers chronic pain, fatigue and health complications.

Her only wish is to spend more time with her friends and Sunshine on a Ranney Day is going to grant it!

Although she faces her battles head on, the social impact of this life change has hit her the hardest. She can no longer easily enter the homes of her friends due to lack of wheelchair accessibility. Her only wish is to spend more time with her friends and Sunshine on a Ranney Day is going to grant it! Elizabeth will be getting an accessible bathroom and a “hang out” space in her teen suite so friends can come spend time with her at home. With this new set-up, her service dog Stevie Ray will not be left behind. He is very excited about having his human friends over! We are ecstatic about breaking ground on this unique and sensational project to help Elizabeth adjust to her new lifestyle. Watch out world, she is going to shine brighter than the sun!

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Photography by Nicole Photography

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Fenton

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

5 Years Old
Modern Day Polio

Sweet Fenton has captured our hearts and will be acquiring a dream-worthy state of the art therapy room from Sunshine on a Ranney Day! Fenton was a perfectly healthy four year old boy until June 22nd last year when he woke up complaining that his neck hurt. He was diagnosed with Acute Flaccid Myelitis (Modern Day Polio). His entire body has become paralyzed; he is on a ventilator and a tracheotomy. This endearing little boy, who is the baby of the family, is fun-loving and laces humor into everything with comments and one-liners. Fenton is very verbal and very inquisitive. He has a big personality; and, has always asserted that he will be nothing less than mighty. He loves life with all of his being and relishes in learning. He is fascinated with different languages and loves learning words in many languages. He follows Atlanta sports teams and keeps up with the players and recruiting for the Atlanta United, Atlanta Falcons and Atlanta Braves. Fenton is currently one of only four cases of Modern Day Polio in Georgia and one of roughly 300 nationwide.

Fenton is currently one of only four cases of Modern Day Polio in Georgia and one of roughly 300 nationwide.

Fenton’s spine was infused with inflammation that quickly destroyed tissue including the nerve conduits leading to his extremities. He is scheduled to receive an innovative new surgical procedure called nerve transfers and is hopeful that the results will be positive; and, he will be able to breathe without a ventilator. Fenton’s daily routine is built upon an intensive therapy schedule. With therapeutic electrical stimulation and consistent movement, children like Fenton show strengthening and meaningful muscle improvements over time. Intensive therapy treatments are important for Fenton to achieve maximum potential. Fenton is a resilient trooper and a complete ray of light. He provides hope in the face of fear and replaces sadness with smiles. Sunshine on a Ranney Day hopes to bring endless smiles to Fenton and his family though this exciting venture! We’d love to see you at the big reveal!

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Photography by Niki Murphy Photography

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Jacob

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

18 Years Old
Down Syndrome, Leukemia

We’d like to introduce you to Jacob. This handsome and ambitious young man will be getting a spectacular bedroom makeover from Sunshine on a Ranney Day. Although Jacob has endured many challenges in his short nineteen years, he hasn’t let them thwart his energetic and loving spirit! Despite having Down Syndrome, undergoing over 100 surgical procedures and surviving Acute Lymphoblastic Leukemia, he has accomplished a plethora of high honors in advocacy for children’s healthcare, educational reform and in several sports through the Special Olympics. He has won three gold medals; one for the 50 M Dash, one in Softball and one for the 50 M walk! With his mom by his side, Jacob has been involved in media awareness events with CBS, CNN, Fox and The Associate Press. He is also involved in many organizations including Rally Foundation for Childhood Cancer Research, the National Down Syndrome Congress, the Down Syndrome Association of Atlanta, North Metro Miracle League, Georgia Autism Society, Autism Speaks, Sibley Heart Center, Make-a-Wish Foundation and Camp Sunshine. The list goes on as he has dedicated his life to reaching his ultimate dream: that society will see him for his abilities and not his disabilities. This is his dream, not only for himself, but for all children. He does not let disability, illness, chemotherapy or anything else get in the way. Although he completed 3.5 years of chemotherapy, he has 4.5 more years of monitoring before he can be considered cured from cancer.

Despite having Down Syndrome, undergoing over 100 surgical procedures and surviving Acute Lymphoblastic Leukemia, he has accomplished a plethora of high honors in advocacy for children’s healthcare, educational reform and in several sports through the Special Olympics.

It will not stop him from achieving his goals and working hard to make a difference. Jacob is adventurous and spirited, enjoying the wonders of teenage living including listening to music, going on roller coasters, attending sporting events and attending Prom at Night to Shine. He loves reading, playing the bells and xylophone, hanging out with his friends, dancing in his tuxedo and playing baseball. We love his smile and warm heart. Nothing will give us greater pleasure than spreading a little sunshine through a dream makeover especially for him!

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Photography by Nicole Photography

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Preston

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

17 Years Old
Tranverse Myelitis

Preston is a 14 year old boy who loves Spider Man, learning about the customs of foreign countries and building blanket forts. He is non-verbal, hearing impaired, medically fragile and suffers from Cerebral Palsy. Preston lives with his 4 siblings in an active household. He shares a room with his 6 year old brother, Asher. Preston cannot walk for long distances and uses a wheelchair when venturing out of the house. Preston must be supervised 100% of the time and is home schooled during the winter months. Before he was born, Preston was diagnosed with Polymicroygria, a genetic disorder, causing seizures, delayed speech and muscle weakness. Preston is a private child who loves to spend time in his room. Sunshine on a Ranney Day is excited to partner with sponsor, Kids R Kids, to build Preston a Dream Bedroom which will give him an escape from his bustling household and his 3 year old twin sisters!

Before he was born, Preston was diagnosed with Polymicroygria, a genetic disorder, causing seizures, delayed speech and muscle weakness.

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Photography by Pear Tree Photography

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Landon

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

9 Years Old
Heart Transplant

This handsome 9 year old is Landon! He had a successful heart transplant at 6 months old. Then, a year later, suffered from bacterial meningitis which left him with brain damage. Landon is non-mobile, non-verbal and communicates through laughs and smiles. Landon loves to fly in airplanes; loves music (Stevie Wonder); loves to be outside with the sunshine hitting his face and loves “shower-time.” Sunshine On A Ranney Day is excited to partner with Make A Wish Foundation to provide Landon with an accessible bathroom to make “shower-time” easier and even more fun!

He had a successful heart transplant at 6 months old. Then, a year later, suffered from bacterial meningitis which left him with brain damage.

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Photography by Niki Murphy Photography

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Sophia

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

16 Years Old
Cystic Fibrosis

We are beaming with excitement to announce that Sunshine on a Ranney Day will be giving Sophia a dazzling dream bedroom makeover! This smart, beautiful and wildly spunky sixteen year old is proof that mighty power can come from within a tiny package. From the beginning, she was a ball of spit and fire. Her unwavering perseverance has served her well. Diagnosed with Cystic Fibrosis at the age of four, she has faced her trials with the strength and courage of a superhero. She has endured daily airway treatments, multiple lengthy hospitalizations and fought off the most dangerous bacterial infection, Burkholderia Cepacia. Despite these aggressive ailments, she exudes confidence, fierce passion and a desire to change the world for the better. Sophia loves music and singing. She has been playing the drums soulfully for over four years and learned to play the ukulele during her last hospital stay. She is a gifted writer, putting this talent to good use by writing songs that her music teacher is helping her produce. She is also writing a compelling novel that is centered around a character who lives with Cystic Fibrosis. This is just one of many opportunities she takes to educate others about CF. Sophia has been actively engaged in her treatment with medical professionals since she was old enough to ask and answer questions. Admirably, she has also chosen to participate in research studies to help further scientific advancements in CF care. We can’t wait to surprise her with the makeover of her dreams! We hope that you will support our efforts and join us at the unveiling of this completed project.

Diagnosed with Cystic Fibrosis at the age of four, she has faced her trials with the strength and courage of a superhero.

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Photography by Niki Murphy Photography

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Matthew

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

7 Years Old
Epilepsy, Autism

Meet Matthew! Matthew is a fun-spirited 7-year old who loves watching Daniel Tiger’s Neighborhood morning, noon and night! He can sing most of the songs and wants his mom and dad to sing with him. Matthew also loves being outside every opportunity he gets. He is a very sweet and caring young boy who cherishes life. At the age of 1, Matthew was developing on a typical schedule for a boy his age and hitting all of the expected developmental milestones. He was crawling, walking and saying his first words. It was a joy to watch him grow. One day in March of 2013, his parents received a phone call from Matthews daycare, stating that he was having a seizure and they were taking him to the hospital. There, Matthew was diagnosed with an ear infection that caused a febrile seizure. This was just the beginning of months of recurring ear infections and other illnesses that came with several more seizures. After seeing a neurologist, Matthew was diagnosed with a febrile seizure disorder. His parents were advised to put Matthew on anti-seizure medication to control the seizures. This, along with surgery to put tubes in his ears, worked wonders for Matthew. In the spring of 2018, Matthew’s family sought the assistance of a different neurologist and had another EEG that revealed he was experiencing a variety of types of seizures and he was diagnosed with epilepsy. Shortly after going through all of this, his parents started to notice changes in Matthew.

He stopped responding to his name, stopped making eye contact, started flapping his hands, and started babbling rather than using the words he had previously spoken on a regular basis.

He stopped responding to his name, stopped making eye contact, started flapping his hands, and started babbling rather than using the words he had previously spoken on a regular basis. Words like “mama” and “dadda” simply disappeared from his vocabulary. Matthew underwent extensive testing from a psychologist who spend a great deal of time assessing his skills and behaviors. At the conclusion of the assessment, they were told that Matthew had Autism. This diagnosis was unexpected and heartbreaking. After speaking with his pediatrician, they decided that the first step in getting Matthew the help he needed was to get him enrolled into the Babies Can’t Wait early intervention program. He was only in the program for roughly 6 months until he turned 3. He then continued services with the county public school system along with private speech, occupational and physical therapy. Now, after four years of weekly private speech, occupational, physical and ABA therapy Matthew is demonstrating significant gains. Matthew’s communication has increased tremendously. The ABA (Applied Behavioral Analysis) therapy helps teach him self-help skills, such as potty training and play skills. Matthew is starting to play more with friends, make eye contact and is talking more. Every single day is a new day and every milestone is big. The small victories add together to make big changes leading to a bright future for Matthew. Sunshine on a Ranney Day is excited to be planning a brilliant dream therapy room to help Matthew enjoy a place where he continue to thrive while in the comfort of his own home! Please join us in making this project come to fruition!

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Photography by Studio79

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Bennett & Lacey

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

18 and 6 Years Old
Joubert’s Syndrome

Bennett and Lacey were born into a world of beeping monitors, probes, tubes, lots of hands – checking vitals, performing tests, surgeries and therapists skillfully manipulating their movements in hopes of training their bodies to follow suit. Bennett was born on January 27, 2000 after a relatively uneventful pregnancy. His parents, Hillary & Jeff, were extremely excited to welcome their first child into the world. However, almost immediately they knew something wasn’t “right”. Bennett’s movements were sluggish. He didn’t cry nor open his eyes; and, had significant issues breathing and keeping his oxygen intake at an acceptable level. After three weeks in the neonatal intensive care unit, a geneticist finally shared the diagnosis – a very rare genetic disorder called Joubert Syndrome. Bennett’s parents were told their new baby was, at that time, one of about 200 people in the world with this diagnosis. Joubert Syndrome is a neurogenetic disorder characterized by low muscle tone, impaired coordination, developmental disability, abnormal breathing pattern, abnormal eye movements, and a distinctive brain malformation. Jeff & Hillary were told that Bennett would most likely not survive infancy and that any future pregnancies had a 1 in 4 chance of the child also being born with Joubert Syndrome. Armed with this devastating news, Hillary & Jeff took their baby boy home; determined to give him the best possible chance to prove the doctors wrong. The first few months of Bennett’s life were literally focused on keeping him alive. His parents would take turns at night, one sleeping and the other staying up making sure that Bennett was breathing.

Joubert Syndrome is a neurogenetic disorder characterized by low muscle tone, impaired coordination, developmental disability, abnormal breathing pattern, abnormal eye movements, and a distinctive brain malformation.

As time passed, Bennett did grow stronger, both physically and mentally despite daily challenges and numerous surgeries and set- backs. His incredible personality began to develop as well. From early on he was loving, caring, happy and brightened whatever room he was in. Lacey was born on January 18, 2013, almost thirteen years after Bennett. Fortunately, her stay in the NICU was only a week. Lacey, also diagnosed with Joubert Syndrome, has faced many of the same struggles as Bennett including a fragile infancy full of sleepless nights; but, generally her health has been better than his was to this point. She still has similar physical challenges – requiring assistance with daily activities including walking. Unlike Bennett, she is non-verbal, causing deep frustration for her. Bennett is now 19, a rising Senior at Roswell High School. He loves to be the life of the party! Bennett is extremely active in North Fulton Young Life, sings the National Anthem at Special Olympics annually, loves music and is working towards becoming a playwright. Lacey is 6 years old and a rising First Grader at Mimosa Elementary. She is creative with an innate sense of humor. She has developed a love for entertainment, has watched “The Greatest Showman” so many times that practically the entire family knows all the lines. She gets around her iPad like a pro, making her own movies, playing music and even FaceTiming friends (without her parents’ knowledge!) Lacey especially loves dance. It’s a part of her. She is a student at Atlanta Dance Central and excels in their adaptive dance program. Sunshine on a Ranney Day is excited to build an In-Home Therapy Room for Bennett & Lacey! On average, this family attends 7 therapy sessions and 2 doctors’ appointments each week. Our hope is that through access to a therapy room in their home, Bennett and Lacey will continue to grow stronger and accomplish more each day!

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Photography by Nicole Photography

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Christian B

Written by Garrett Nantz on June 26, 2021. Posted in Meet the Kids.

17 Years Old
Lennox-Gastaut Syndrome

This dapper seventeen-year old young man with an ear to ear smile is Christian. His infectious grin can melt your heart and comfort your soul. He touches the hearts of everyone he meets and inspires others to make a difference. Christian is seventeen years old and attends Dacula High School. He lives with his Mom, Dad and two younger sisters (Cathryn 15 and Ashlyn 13). Christian was born healthy and developed as an infant should, meeting milestones as expected. He was a quiet little guy and didn’t have much to say in terms of babbling or words as he was approaching two years old. He was a late walker, as he started walking around 18 months. That was also about when he started having frequent involuntary breath holding spells. His lips and fingers went blue and he would go limp for 30 seconds or so. This was incredibly concerning and it was happening involuntarily. Christian began having grand mal seizures, drop seizures and breath holding spells on a daily basis. It was a challenge to get these seizures under control, as well as obtaining a true diagnosis. He and his family spent most of their time with neurologists or in the hospital. They were desperately looking for answers and sought the help of a geneticist. Christian was in status epilepticus meaning that his seizures were constant and wouldn’t stop. Doctors had to put Christian in a drug induced coma and he was in the PICU for almost 2 weeks. He was only 3 years old. He was in the hospital for a month and they still needed a way to manage his seizures. They tried multiple medications and a Ketogenic diet. Neither worked. He also had reflux and difficulty swallowing, so it was decided that he needed a G-Tube and a Fundoplication to help with the reflux.

Christian began having grand mal seizures, drop seizures and breath holding spells on a daily basis. It was a challenge to get these seizures under control, as well as obtaining a true diagnosis.

Christian was also diagnosed with Spastic Cerebral Palsy due to his disordered muscle tone and contractures. He endured another significant episode of epilepticus and was hospitalized in November 2013. He spent Thanksgiving in the hospital and wasn’t released until Christmas. After that, he was assessed by a new neurologist, who diagnosed him with Lennox-Gastaut Syndrome (LGS). LGS is a severe form of epilepsy that typically becomes apparent during infancy or early childhood and is most often diagnosed between 3-5 years of age although it took longer to determine that this was another syndrome Christian had. Since then Christian has been on a regimen of six medications and daily supplements which have minimized his seizures. He is essentially nonverbal, but can vocalize some sounds and words including Momma, Dadda, PopPop, Nana and Papa. He also uses sign language with a few consistent signs that he uses to communicate basic want and needs. He requires full assistance when walking and wears AFO braces to help support his feet and legs. He can take a few steps on his own when he’s highly motivated. If he does walk, he tires very easily and can only walk short distances. His home is currently not wheelchair accessible. When he needs help with mobility, his family carries him from room to room. He uses a wheelchair for mobility outside of the home. Christian is such a laid back kid and just goes with the flow. He can be quite the jokester. He loves to be silly and get a reaction out of you. He enjoys looking at pictures of family members and friends. He has a special memory book of photos that he looks through every day. He also loves going on family vacations to the beach and Disney World. He enjoys watching his favorite shows when he’s relaxing. Christian’s favorite place to unwind and be free is his bedroom. That is why Sunshine on a Ranney Day is thrilled to be able to give him a dream room makeover and renovate his bathroom to be accessible. This project will soon be under way and we hope that you will get a kick out of seeing the finished product. This will be a labor of love and we invite you to join us in support of this venture.