Jacah J'Don Jefferson "Life After Shaken Baby Syndrome"
On September 23rd 2006 a healthy 6lb 2oz, 19 inch baby boy blessed this earth with his presence. His name is Jacah J'Don Jefferson. After 5 short months of life Jacah was brutally abused by his biological mother's boyfriend. Doctors diagnosed him with Shaken Baby Syndrome, also called Abusive Head Trauma, which means a serious brain injury resulting from forcefully shaking an infant or toddler. His injuries were so severe that doctors believed he would be blind, need a trachea or may not even survive. After being discharged to a relative that gave him back to CPS, two foster homes where he endured more abuse, God blessed his maternal grandparents with custody. After two years his entire biological family faded away but he continued to reside with his Step-Grandmother whom he calls "mama", the only dad he knows Dexter, and his uncle Jeffrey and Earnest. Due to his injury Jacah suffers from Cerebral Palsy's, Seizure Disorder, development delays, and vision impairment. With all that he continues to endure. Jacah lives his life after Shaken Baby Syndrome to the fullest. He is a lover of music, traveling (especially by cruise ship), and continues to be the center of attention to his family. Jacah is known for his million dollar smile and wardrobe (especially his tennis shoes). In 2015 Jacah won the hearts of many across the nation with his #TeamJacah movement in a quest to purchase a wheelchair accessible van. He is the inspiration of this nonprofit organization; Love Has No Disability Inc. What we would like for you to know about Jacah, is that his life and the love he brings into our lives is a true example of the love Jesus showed on the cross. No matter what pain he feels, or what obstacles he may face, Jacah does it with a smile, and that's proof that there is truly "Life After Shaken Baby Syndrome"!
Sekai Southern "Life After Symptoms of Pallister-Killian Syndrome"
Sekai Southern was born March 15th, 2010 as a 35-week preemie. Straight out of his mother's womb he began to kick and breathe so much life into all who was around him. We knew at birth that he had some challenges but didn't know to what extent. Doctors informed us that Sekai had only one functioning kidney, but all other organs were strong. As Sekai began to develop the doctors notice that some of his body parts were not developing at the same rate. He had a large head, long torso, short legs and fingers. Immediately they began genetic testing and initially they thought he would be a Dwarf or at least a Midget. During their initial testing phase, they, had even considered Pallister-Killian Syndrome. Pallister-Killian Mosaic Syndrome is a developmental disorder that affects many parts of the body. This condition is characterized by extremely weak muscle tone (hypertonia) in infancy and early childhood, intellectual disability, distinctive facial features, sparse hair, areas of unusual skin coloring (pigmentation) and other birth defects. Most babies with Pallister-Killian Mosaic Syndrome are born with a significant hypertonia, which can cause difficulty breathing and problems with feeding. Hypotonia also interferes with the normal development of motor skills such as sitting, standing, and walking. About 30% of affected individuals are ultimately able to walk without assistance. Additional developmental delays result from intellectual disability, which is usually severe to profound. Speech is often limited or absent in people with this condition. Although Sekai had so many of these features and symptoms the genetic testing did not prove to be positive. Today at age 6, Sekai still has developmental delays, he is still non-verbal and is diagnosed with an Intellectual Disability. Despite functioning at the capacity of a 3-year-old, he loves sports and can outrun many children in his age group. We continue to stay hopeful and prayed up, that this too shall pass. Each and every day of his life, is a day of hope, love and progress.
Cameron Williams "Life After Spinal Muscular Atrophy"
Cameron J. “Cam” Williams was born on May 22nd, 2012, as a healthy 9lb 2oz baby boy. He has been diagnosed with a disability called Spinal Muscular Atrophy (SMA). SMA a disability that causes low muscle tone in infants and adults causing some to not be able to move, sit up, stand, walk or breathe on their own. Cameron was diagnosed at 5 months old on October 31, 2012. There are four different types of SMA. Cameron has Type 1. This type has been said to be the worst type of the four, which is determined by the age of onset leaving infants with a life expectancy of 2 years. Type 1’s are diagnosed between the ages of 0 to 6 months. Cameron is now 4 years old, surpassing the life expectancy age and doing far beyond where doctors thought he would be at his age. Cameron loves watching TV and playing just as a typical 4-year-old child. He has an older brother named Tre, who he loves laughing and playing with. Even though Cameron can't move much, he has a very bright personality and can communicate through facial expressions and some words. There is no cure for this disability but, just recently we got news that a drug for his disability was FDA approved. It was brought through many trials over the years and finally it met the requirements of the FDA to be given to children with SMA. This drug is said to help improve the motor skills in SMA children. Cameron will be going in for his evaluation for his first injection this month.
Lilliana Mercado "Life After Quadriplegic Cerebral Palsy"
Lilliana Mercado was born March 19, 2009. She was born a bit early and had a little heart murmur. At her 2 months checkup, her pediatrician noticed her head wasn't growing as it should and recommended some test be done. I decided to get a second opinion and was told we should monitor her development as well as order an MRI. As months past we noticed she was not reaching certain milestones, the MRI also showed that her brain had not fully developed and that she would suffer moderate delays. When she was 3, she was diagnosed with Quadriplegic Cerebral Palsy. We call Lilliana, “Lilly” and she is absolutely the light of our family. Everyone she comes across adores her, especially her strength and determination. Lilly is truly an inspiration to me. She loves her brothers, sisters, cousins, animals, babies, basketball and enjoys watching many movies and kids shows. Lilly amazes us every day!
Caliph Jude Newton "Life After DiGeorge Syndrome and Multiple Congenital Anomalies" Caliph Jude Newton (pronounced Ca-leaf) but we mostly call him CJ 6 years old Caliph was born with multiple congenital anomalies including tibia hemimelia, femoral bifurcation, four fused toes, and club foot all on the right leg. He also had coarctation of his aorta. At seven months he had his right leg above knee amputated. Due to his amputation Caliph wears a prosthetic leg with a knee hinge. This allows him to walk and have the sensation of bending his knee. He is blessed to be able to have two prosthetic legs, one for walking and the other for running. At two years old he was diagnosed with acute hypertension. Caliph takes medication to control his acute hypertension. Caliph was also diagnosesd with DiGeorge Syndrome at two years old as well. DiGeorge Syndrome affects Caliph differently from most kids. The reason is because he has variants of the syndrome, where as most kids, have the full syndrome. DiGeorge Syndrome affects Caliph's immune system, causing his memory B cells in his body to lose memory after about six months of the vaccinations he has received. He also develops cellulitis on his skin due to DiGeorge Syndrome, which causes him to have to take antibiotics. Since DiGeorge Syndrome affects his immune system, he also takes prophylactic antiobiotic three times a week to help prevent any infections. His DiGeorge Syndrome affects his speech due to his submucosal cleft palate, in which he takes speech therapy. He was also diagnosed with migraine syndrome at age five. We have been told that Caliph is a medical mystery. He has so many issues medically but they cannot pin point exactly what is the root cause. We have also been told that as he gets older he may experience more congenital anomalies. Until then we will continue to enjoy the journey we are on. Caliph sees at least thirteen doctors throughout the year for his multiple anomalies. Caliph loves going to the movies. He loves playing with his cousins. He loves going to the park. He loves watching his tablet. He loves learning how to play sports such as: basketball and tee-ball. He loves going to the fire station and meeting the local fireman. He loves firetrucks. He is fascinated with dinosaurs. He can name them as well as let you know if they are a carnivore, omnivore, or herbivore. He loves taking pictures. He loves learning how to speak Spanish in his kindergarten class. Lastly, he loves different types of music. He loves doing the cupid shuffle. The one thing I want you to know about Caliph is that he is my miracle baby. Caliph is so smart and very affectionate. He is friendly and loves being with his family. He has had a total of 8 surgeries in the 6 years he has been on this earth. Even through all that we go through, he continues to keep a smile on his face. He is my little superhero. Caliph's smile can brighten any room. Caliph wants to be a FIREMAN and Superhero when he grows up. Danielle Lewis
Cameron Michael Hilaire "Life After Lennox-Gastaut Syndrome"
Cameron Michael Hilaire, born April 19, 2006 to two very athletic parents who knew a future All-Star was born. He was perfect; 10 fingers, 10 toes and a beautiful head of hair. At 6 weeks, he had what mom thought was his first seizure – little did she know, they started in the womb. A stroke in utero is what the doctors confirmed after an MRI. Second diagnosis, infantile spasms and as he got older, that upgraded to Lennox-Gastaut Syndrome which is a severe form of epilepsy that typically becomes apparent during infancy or early childhood. Affected children experience several different types of seizures throughout their lifetime - most commonly atonic, tonic and atypical absence seizures. Doctors said he would never walk…but look at God. Knowing that his life would be faced with many hurdles, mom took them head on starting with early intervention therapies. At age 2, he was diagnosed with Autism and over time has received additional diagnoses of having an intellectual disability, an orthopedic impairment and being developmentally delayed. Not falling far from the apple tree, Cameron’s love for sports was apparent early on. But two sports stood out the most - basketball and volleyball; both sports played by his parents. Once he started walking unassisted at age 2 ½, he always had a ball in his hands and on game days would stand in front of the tv with a ball on his hip watching with excitement. He enjoys spending time outdoors, playing with his younger brother and of course, watching sports because in Cam’s world, ball is life. Cameron continues to have daily seizures, is non-verbal and 100% dependent on assistance with all daily living activities. All of us have times of stress, loss, failure or trauma in our lives. How we respond to these events has a big impact on our wellbeing. We often cannot choose what happens to us, but we can choose how we react to what happens. In practice it’s not always easy, but one of the most exciting findings is that resilience, like many other life skills, can be learned. As a family, we continue to have positive emotions – like joy, gratitude, contentment, inspiration and pride – and we don’t just feel good when we experience them. They also help us perform better, broaden our perception, and increase our resilience. So although we need to be realistic about life’s ups and downs, it helps to focus on the good aspects of any situation.
Lance Aquino Ware "Life After Prematurity Lung Disease" Lance Aquino Ware was born on May 25, 2018, as a 29-week preemie. Lance was only 1 pound, 11 ounces. We will never forget 2014. When I was 18 weeks pregnant, my OB/GYN suggested a cervical cerclage considering a previous miscarriage of mine. My pregnancy was considered high-risk, so we monitored and checked in weekly with our obstetrician. Two weeks later, she realized Lance was underweight and put me on bed rest at home. We were nervous and shaken; however, we kept smiles on our faces and embraced positive energy around us. In April of 2014, Lance had no progression to his growth, so the pregnancy was diagnosed an intrauterine growth restriction (IUGR). This is a condition in which a baby doesn’t grow properly to a normal weight in utero. When Lance arrived, he was immediately placed in an incubator and sent to the NICU. He was too small to be held; too small to even receive the first kiss from his mother. Lance spent five months in the NICU at Texas Children’s. When he was born, I felt like that moment was a never-ending story. The first time I laid my eyes on him, he looked helpless, sick and fragile. Our NICU stay was an emotional journey: two blood transfusions, many feeding tubes, and a broken femur. Lance started on a ventilator and then moved to a CPAP. Lance’s father and I were filled with joy when we were able to bring our “tough guy” home on Oct. 13, 2014. He weighed 10 pounds, but still needed a small amount of oxygen and his feeding tube. By December 2014, Lance was breathing on his own and feeding by mouth. All we could say was: “Praise God for all the glory!” Of course, Lance had many follow-up visits and physical therapy sessions, and he was diagnosed with several developmental delays. Lance continued to overcome the odds, though. His father and I are now dedicated members of Texas Children’s Newborn Family Advisory Committee (NFAC). We want to give back to NICU parents who are in the shoes we filled, those who feel brokenhearted, hopeless and overwhelmed. We’re there to guide them with an open, genuine heart. If you see Lance with your own eyes today, you’re witnessing a miracle. He enjoys interacting with his peers and playing at the park with his younger brother. Let’s not forget how much he loves playing music on his instruments. He knows the name for each one! Every day is drum practice at home with some help from his favorite YouTube channels. He is getting the hang of drumming to his favorite tunes! Lance has a passion for playing instruments. Enjoys playing his drum set, pretend to play his band instruments, and enjoys watching HBCU bands on “YouTube.” Lance is a pre-kindergarten at Stovall EC/PK/K School. He already recognizes his colors and shapes, and he knows his numbers up to 50. Lance – you rock, buddy! The journey we faced at Texas Children’s was written in stone from the beginning, and we were chosen to be your parents. We’re so blessed to be your parents. We will continue to rock to your music, so let the beat go on.
Makenzy Ferrier "Life After Hypothalamic Hamartoma"
On July 28th, 2006, Makenzy Ferrier came into the world. She was born full term and expected to be a typical child. At three months, her doctor’s noticed something wasn’t right. Her muscles were not developing at a normal rate. Makenzy began physical therapy at 4 months old, with a diagnosis of poor muscle development. As time went on, we noticed Makenzy’s condition wasn’t improving so an MRI of her brain was suggested. The MRI showed extra grey matter, but it was not considered to be anything because it wasn’t affecting anything. Through blood and other testing, no doctor could tell us why she wasn’t developing as she should. She was diagnosed with developmental delay. When Makenzy turned 3 years old, she finally began to walk. Once she started walking, she began to have life threatening seizures. This then gave her a diagnosis of epilepsy. The grey matter was later diagnosed as a hypothalamic hamartoma, which is a tumor-like formation on the hypothalamus, the area at the base of the brain that controls the production and release of hormones by the pituitary gland. Once this was discovered,it explained all of her diagnosis of autism, encephalopathy, hypotonia, precocious puberty, intellectual delay, mixed receptive-expressive language and others. She was the third in the country to have an ablation surgery of her brain tumor. This means they burned the tumor. She also has a deformity in her legs, which we are in the process of correcting. Makenzy had surgery in May of 2019 on her entire left leg and will have the right leg done next May. Through all of this, Makenzy loves to smile, she enjoys playing on her iPad, taking people’s hats and singing. She has joined a disabiled cheer team and looking forward to performing in tournaments. Makenzy has a sweet demeanor through all of her labels. She is a wonderful blessing and beautiful creation of God
Carlos Carr Jr "Life After ASD"
Carlos Carr Jr. better known as C.J. was born has been an exciting, rewarding journey for our entire village. CJ is a 19 year old graduate of Shepherd High school. CJ was born with Autism Spectrum Disorder (ASD). This condition is a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication by restricted or repetitive patterns of thought and behavior. This condition is a serious developmental disorder that impairs the ability to communicate and interact. At birth doctor’s said CJ would never walk, talk and several other discouraging diagnoses. However, being the blessed child that he is; CJ is Conquering and Overcoming Autism! CJ stands over 6 feet tall and he walks, talks and makes sense of so many things. CJ loves music! He plays piano by ear, and has a phenomenal memory. His favorite artist is Cardi B! When Cardi B’s music comes on the radio his face lights up with a huge smile. This moment to witness him light up every time he hears her is Priceless. CJ also loves Box Fans, Bowls and Microwaves. He loves to tap the side of the bowls to hear the noise that the bowl makes. CJ has over 20 different bowls from all over the country. Several years ago I posted a post on Facebook of him picking out bowls, and people from all over started sending him bowls. Last but not least CJ loves fashion. He loves to get dressed up nice and top his outfit off with a nice pair of sunglasses. That’s my CJ fly guy & that is what #AutismSauce is! CJ also have a Foundation, Called CJ Autism Foundation, that bring so many Uniquely able People together while Giving back to the community! Go C.J that's My C.J!
Nailiany Carrero "Life After An Undiagnosed Illness"
On February 16, 2007, Nailiany was born. It wasn't until she was 10 months old before we discovered that Nailiany couldn't hear. The doctors thought it could be a small problem that they would solve in one day, but later in an MRI they realized that Naily's cochlea never developed. Nailiany is totally deaf. In the same exam they discovered that Nailiany had cerebral palsy. She was three years old when she had her first surgery. She received a cochlear implant so she could listen. Sadly, she couldn't use it, she never got used to the sound and the noises around her. A year later she was diagnosed with microcephaly and hypotonia, which is a condition of flaccid muscles and muscle mass deficiency. Nailiany had problems when she ate, was diagnosed with eating disorder and suffered for many years of severe pain after eating. It was not until she was 10 years old that doctors realized she had Barret's esophagus, the walls of Nailiany's esophagus has damaged cells, due that same reason she has to use medications for life. At age 12 on an x-ray test they realized that Nailiany had "Malrotation", her intestine was twisted, a problem she had since she was born. She had an emergency surgery 4 month ago. Nailiany does not currently have a diagnosis in general, even genetic doctors and neurologists have not found a name for the group of conditions that Nailiany has. Despite all her conditions all we do know for sure is that Nailiany really wants to live, play and laugh and that she is full of love and joy. We are more than blessed to have an angel from heaven living in our house.