We are blessed to have these children and many others as Kosair Kids®. We’d like to share some of their stories.
At 3lbs 12 oz, Jenna Mohammed was the first baby born in Louisville in the year 2009. The itty bitty Baby New Year had a long way to go. Jenna and her family have had great partners in making her dreams a reality.
At 8 years old Hunter has been through a lot. Hunter was born with Down’s Syndrome and has suffered from complications with his heart but that doesn’t stop him. Hunter always has a smile on his face, especially when he is hanging out with his best friend – his brother.
Caden was born in 2007 with Spina Bifida, a clubfoot and Hydrocephalus.
At 13 months old, he needed a shunt replacement due to seizures. As a toddler, Caden needed several leg operations, one to restructure his clubfoot and another to help straighten his right leg to be able to walk in full braces.
Every Kosair Kid is special, but only Stanley is in the Rockabilly Hall of Fame.
He almost didn’t survive childhood.
Today, June loves to work out at the gym. The Pleasure Ridge Park resident has run several mini-marathons. In short, she can’t sit still.
That’s a long way from where she started.
Elizabeth was born with several health issues, from a heart condition to chronic lung disease and digestive problems.
Josh and Nicholas
When Todd and Robin adopted twin 18-month-old boys from Ukraine, the youngsters had some catching up to do.
Josh and Nicholas are autistic and have cerebral palsy. Their development was further delayed from spending their lives in an orphanage.
As the new school year dawned, Vanessa, Imani’s mom, faced a crisis.
Her 9-year-old daughter, lost one of her hearing aids, and Vanessa, a single mother who was temporarily out of a job, didn’t know how she would replace the expensive device.
From birth, Winslow faced many developmental challenges. But today, thanks to much love and support from his family and a huge boost from Kosair Charities, the six-year-old hardly misses a beat.
Today, Winslow is active, charming and highly social.
Shortly after Griff was born, he had trouble breathing. Unsure of the cause, doctors spent several days testing Griff to find an answer. He was soon diagnosed with a rare form of Down’s Syndrome. It is the thought of Kosair’s help going forward that eases his parents’ mind.
Following complications at birth, Addie was diagnosed with symptoms similar to cerebral palsy. She would need expensive therapy to live a full life. Her parents, Dustin and Jill, were left scrambling when their insurance declined coverage for Addie’s necessary therapy. The family knew of one place to turn, Kosair Charities. Fortunately, Kosair covered all of Addie’s medical bills. It is a blessing the family works hard to pass on.
At just 7 weeks old, Lexi was diagnosed with infantile botulism, an illness that can occur when an infant ingests bacteria that produce a toxin inside the body.
The condition can be frightening because it can cause muscle weakness and breathing problems.
Born at 26 weeks, not only was Sascha extremely premature, but she also had suffered a stroke upon delivery. With the help of Kosair Charities, the family was able to get Sascha in front of good doctors who recommended the family to First Steps to get Sascha on the road to the therapy she needed.
When the family’s second son, Clayton, was born in March 2010, their joy was tempered by some unexpected news: Clayton had a unilateral complete cleft lip and palate. Those conditions are often noticed on an ultrasound at 20 weeks, but in this case, that didn’t happen.
Maralyn has gorgeous red curls and a sly sense of humor. When her mother jokes that being featured in Kite Tales will make Maralyn famous, she replies, deadpan: “I’m gonna be famous anyway.”
Zoie was born with a rare genetic disorder that resulted in a second thumb on one hand, as well as one eye with an abnormal shape and size. This condition, called microphthalmia, prevents complete vision.
Kamauri needed a molding helmet to correct a problem resulting from plagiocephaly (a flattening of one side of the head) caused by torticollis, a condition in which the head is tilted toward one side and the chin to another side.
Hannah and Keaton
Jason and Holly looked forward to the birth of their twins with much excitement.
However, the twins made an early arrival. Keaton Wayne, weighing 2 lb. 4 oz. and Hannah Renee, weighing 2 lb. 11 oz., were born at only 28 weeks.
Six-year-old Megan lives a perfectly normal life, in spite of the fact that she was diagnosed with Down syndrome at birth.
While the initial shock of having a special needs child was overwhelming for parents Tom and Jennifer, they quickly made a decision that would set the course for Megan’s life.
“We had no idea that her leg was not developing properly until birth,” said mother, Tracey. Not only was Ella born six weeks premature, spending five weeks in a neonatal intensive care unit, she also was diagnosed with severe acid reflux and amniotic band syndrome, the reason for the improper development of her leg.
Whitney was born premature on August 14, 1996, almost four months before her due date, she entered the world weighing just one pound and seven ounces, measuring 12 inches long.
Dr. James Hurt
Meet one our oldest Kosair Kids®. Dr. James Hurt was diagnosed with a bone infection when he was just 11 years old. After receiving his diagnosis in 1934, he was immediately referred to Kosair Crippled Children Hospital.
Once a week, Randy’s mother carried her baby boy on her hip through the front doors of Kosair Crippled Children Hospital,
making him feel like the most special kid in the world. From the time Randy was just a toddler until he was 7 years old, he made weekly visits to Kosair. He was born with a club foot and had to have cord lengthening surgery.
It will be 55 years this summer that Pamela began her Kosair Charities experience. After she was diagnosed with Blount’s Disease in 1958 at only 1 year old, her family turned to Kosair Crippled Children Hospital for treatment.
Since infancy, Chester had undergone several operations and therapy at a Shriners hospital supported by Kosair Charities and Kosair Shrine Temple to fix a “a club foot that was so bad that basically he didn’t even have a foot.” Using a remarkable surgical procedure, doctors stretched Chester’s bones and used them to form a new foot.
Anthony had been in his mother’s Tummy only for four months when prenatal testing showed a birth defect called gastroschisis — a defect that causes the baby’s intestines to protrude from a small hole in his abdominal wall.
Ashley was born with a defective liver, causing severe jaundice, constant itching and malnutrition. Doctors told her parents, Ed and Theresa, that Ashley needed a liver transplant to survive.
Brittany was in the sixth grade when her doctor diagnosed her with scoliosis, or curvature of the spine.
The family’s primary care physician referred them to a spine specialist who examined Brittany and recommended she wear a back brace. Brittany was in that brace for 23 hours a day, but that didn’t slow her down.
Isabelle was born on May 1998 with a club foot. With her right foot turned in, it would be impossible for Isabella to learn to walk normally, or to do the things that every parent anticipates for their children: running, dancing, riding bicycles.
Charlie and Debbie life changed drastically within the course of one day when the Hardin County couple discovered that their son, Johnathon, had an incurable bleeding disorder.
Kristin was born with spina bifida, a birth defect in which the spine has not closed – resulting in paralysis and other serious lifelong disabilities, requiring much medical attention and intensive therapy.
At 13 years old, Dana was diagnosed with a detached retina. She needed immediate surgery to save her vision, but her family could not afford the bill on such short notice. That’s when Kosair Charities stepped in.
Samuel began fighting for his life at only 6 hours old. Diagnosed with Persistent Pulmonary Hypertension of the Newborn (PPHN), he was immediately to a Louisville Hospital. Samuel needed intensive medical care and treatment.
Hannah was born with C.H.A.R.G.E. Association, a rare disorder characterized by multiple birth defects, she had a variety of disabilities including hearing loss, cleft palate, facial paralysis and growth and developmental delays.
Erica was 15 years old when she was diagnosed with bone cancer. The teenager was to go through extensive therapies to keep her alive while other’s her age were hanging with friends and going to the movies.
Dustin had repeated ear infections until, at age four, he needed a surgical operation or else he would face severe, permanent hearing loss.
Jamie, of Louisville, needed surgery to remove a bronchial cyst and correct an ear deformity, but like many, his parents could not afford the cost. Kosair Charities was able to help.
Kelly of Campbellsville was born with cerebral palsy. Her only hope to ever walk without braces depended on a new kind of corrective surgery not covered by her families insurance.