Kosair Kid: Grayson

After Kosair Kid Grayson's premature birth, doctors diagnosed him with periventricular leukomalacia (PVL), a type of brain injury that occurs to the inner part of the brain. At 18 months, doctors discovered that Grayson also suffered from spastic triplegic cerebral palsy, a severe form of the disorder that affects all four limbs, the trunk, and sometimes the face.

“It’s still hard to wrap our heads around this,” explained Grayson’s dad, Shawn. “We have had to watch our sweet, strong, loving little boy go through traumatic and painful procedures and surgeries just to give him a chance at doing things that most people take for granted like walking, running, and sitting independently.”

Continued care for any specially blessed child can lead to financial collapse. This reality set in as his mom, Jennifer, was forced to leave her job to care for Grayson full-time.

“His diagnosis turned our lives upside down,” said Jennifer. “We were scared for his future and what life would look like for him. We are so grateful we found Kosair for Kids.”

Thanks to donations from people like you, Grayson receives therapies he needs to thrive. Together, we’ve also purchased a wheelchair and a mobility device that allow Grayson to experience the world with his family. 

“If not for Kosair for Kids, many families like ours would be submerged in debt and unable to provide their children with services and equipment that they so desperately need,” Jennifer said.

Kosair Kid Jace makes a friend everywhere he goes. Perhaps he will lure you in by explaining that he wants to be a T Rex. 

Chris and Holly learned that their son had Down syndrome while Holly was still expecting. The diagnosis was a shock, one that became more stressful when Jace was born with an atrial septal defect—a hole between the two upper chambers of his heart. 

Jace’s heart condition was closely monitored during his infancy and toddler years. His parents took him to countless appointments and struggled to keep Jace at ease during his multiple ultrasounds and EKGs.

“The sense of not being in control of something like that just feels hopeless,” explained Holly, who serves and protects her community as an LMPD officer. 

Unfortunately, the hole in Jace’s heart became larger, forcing doctors to operate.

“Jace’s heart procedure was a very difficult experience,” Chris said. “The relief we felt when Kosair for Kids stepped in is hard to describe. I’m not sure where we’d be without Kosair for Kids.”

Friends like you supported Jace through your gifts to the Kosair Kids Financial Assistance Program. Your gifts meant Jace’s family could focus on their boy’s care and recovery without the added stress of a financial burden. 

”It really meant a lot to have that support, knowing that we wouldn’t fall flat on our face," Chris said.

Kosair Kid Jimmie Jr., affectionately known as "JJ," wants you to know that “you’ve made a big difference!”

“I realized there were some issues when JJ was six months old,” his mom, Amanda, explained. “It was scary because he was not meeting developmental milestones.”

JJ qualified for the statewide early intervention program, First Steps. They used sign language to communicate with the sweet boy until he spoke his first words at age 3. But when doctors diagnosed JJ with Asperger’s Syndrome at age 6, his parents knew he needed specialized therapy. A child with this disorder frequently struggles to communicate, especially in social situations. They can suffer behavioral issues that magnify everyday hurdles and make it difficult to learn and grow.

“Our insurance would not cover the cognitive behavior therapy that he very much needed,” said dad, Jimmie Jr. “JJ faces many of the same challenges a child with autism may experience and would benefit from the same behavior therapies, but we could not afford the help that we knew would change his life.”

Thanks to you, JJ is flourishing. Your gift to the Kosair Kids Financial Assistance Program helps fund his vital therapies at the Kid Spot Center in Somerset. Your generosity also helps dozens of other Kosair Kids like JJ, whose families could not otherwise afford similar help their child desperately needs.

At 18 months old, doctors diagnosed Caden with a rare, progressive disorder called spinocerebellar ataxia type 5. The condition affects his central nervous system and leads to incoordination of the hands, arms, and legs and impaired balance when walking. Due to his condition, Caden is unable to stand or walk independently. As the disorder progresses, it can also impact speech and fine motor skills, among other things. The rarity of the disease means Caden’s medical team is unsure what his future will look like.

“Caden's diagnosis put us in a very dark place. We felt alone, scared, and fearful,” said Matt, Caden’s dad. “But from start to finish, Kosair for Kids has been so kind and gracious to us.”

Navigating life with their child’s rare disorder has been challenging and costly. Medical bills to see specialists and obtain necessary equipment quickly add up, and working out the logistics of going places with Caden takes a lot of planning.

“The Kosair Kids Financial Assistance Program help is life-changing for us,” Matt said. “We hope your donors know that they have allowed us to focus our time and resources on Caden without the financial stress of trying to find ways to pay for his equipment.”

With your support, Kosair for Kids has provided Caden with accessibility equipment including a new ramp at their home and a van modification. The ramp and van modification led to something Caden’s parents could never have imagined.

“For the first time in his life, we saw our son get out of the car and walk into our house with his gait trainer by himself. It was such a precious moment that we will never forget,” his mom, Alex, shared.

At first glance, Kosair Kid Maison appears to be a typical, active 3^rd grader who enjoys playing with dinosaur toys, riding his bike, and playing tennis. You wouldn’t know it, but Maison faces a rare and invisible disease. Thanks to your generosity, he continues to get the help he needs, but doctors fear his journey may take another frightening turn.

Doctors diagnosed Maison with Severe Chronic Neutropenia, a rare blood disorder characterized by abnormally low levels of neutrophils. Here’s how Maison described it to us: “Do you know what a white blood cell is?” the boy asked. “I don’t have any. That means I can’t fight off infections.”

Any time Maison reaches a temperature of 100.4 degrees or higher, his mom, Tracy, must rush him to the emergency room for medical protocols to ensure he does not have an infection that could kill him.

Thanks to kind-hearted donors like you, Kosair for Kids has relieved some of the burden on Maison’s family. The Kosair Kids Financial assistance program covered the cost of Maison’s critical medical care, something Tracy said lifted their family up when it felt like they had hit rock bottom.

“If it weren't for Kosair for Kids, our family would be submerged in medical debt. We wouldn’t have the hope to continue searching for answers. The financial assistance has helped us get back on our feet,” Tracy said.

Levi is a resilient little boy who enjoys strawberry and banana yogurt, Daniel Tiger, and being a big brother.

When Levi was diagnosed with leukemia at three years old, his parents, Ashley and Jon, felt lost and terrified. No one is prepared to learn their child has cancer. With Jon in dental school and Ashley working full time in addition to having a newborn at home, the thought of what was to come was overwhelming and scary.

“The fear of Levi’s future, the time that was needed for treatment, the unexpected financial stress was all too much for us to bear,” Ashley explained.

The Petries found relief when they learned about the Kosair Kids Financial Assistance Program. The help they received from your donations allowed them to focus on Levi’s care without financial worry. Your generosity also allowed them to tend to their newborn and keep Jon on track to graduate.

Like all parents, the Petries hope their son will live a long, healthy, and happy life. They’re inspired by Levi’s resilient spirit and grateful you have made this fight easier for them to endure. 

Ashley had this message for you, our wonderful donors: “We are so thankful for your kindness and generosity. We are beyond grateful for your help in such a stressful time of our lives.”

Luciana is an intelligent, creative, and funny little girl who loves Christmas stories, playing soccer, and telling jokes in Spanish. You’d never know it by her sweet smile, but Luciana has battled a life-altering disease.

What started with a fever culminated in a leukemia diagnosis at three years old. It came as a shock because Luciana was an otherwise healthy and energetic child. Her parents, Karla and Adan, suddenly feared they could lose their only child.

Through the Kosair Kids Financial Assistance Program, funded by your generosity, Luciana received the best urgent medical treatment possible without adding additional burdens on her family. It brought them peace and relief during an uncertain time.

“If it weren’t for Kosair for Kids, we would not have been able to cover the cost of Luciana’s treatment,” Adan explained.

Luciana wants to grow up to become a pediatric oncologist and help kids like her who are fighting cancer. Karla and Adan hope their self-determined princess grows into a healthy and compassionate adult who helps others the way strangers have helped them.

Karla wants you and others whose compassion allowed them to concentrate on what is most precious in their lives to know this, “I would like to thank them from the bottom of our hearts since we were able to focus more on the well-being of our daughter without thinking about the financial difficulties of her treatment. Thank you for being there for us!”