Kevin’s healthcare journey began at just three months old when he was diagnosed with Neuronal Migration, Microcephaly, and Differentiation Muscular Hypertonicity. This diagnosis marked the beginning of a new chapter for Kevin and his family, as they worked through the complexities of his condition.
Prior to finding care at Nemours, Kevin’s diagnosis affected every aspect of daily life. His mother describes a relentless cycle of hospital visits and treatments. “He missed lots of school, and family trips,” says Kevin’s mom. “We would wake up 7-10 times a night, he would never sleep because of pain and so much more.”
However, hope and new experiences emerged when Kevin’s family discovered Nemours in November of 2023. After months of research, they made the life-changing decision to seek care at Nemours, leaving behind their home in Michigan in pursuit of care for Kevin.
From the moment they stepped through the doors of Nemours, Kevin and his family were embraced with compassionate care. The dedicated team of doctors, nurses, and clinicians, led by specialists such as Gastroenterologist Dr. Denham, Urologist Dr. Obregon, Dr. Christina Morris, Kevin’s Primary Care Physician, and many more. Kevin’s care team has supported him and his family with an unwavering commitment to Kevin’s well-being.
Central to Kevin’s journey with Nemours is his reliance on a gastrostomy tube. A gastrostomy tube (also called a G-tube) is a tube inserted through the belly that brings nutrition directly to the stomach. It’s one of the ways doctors can make sure kids who have trouble eating get the fluid and calories they need. This feeding tube helps make sure Kevin’s nutritional needs are met with precision and care, offering him the sustenance required for his continued growth and well-being.
Reflecting on her experiences with Nemours, Kevin’s mother expresses gratitude for the invaluable education and support she received. She recalls moments of empowerment as she learned about her son’s body and diagnosis. The dedication of the staff, refusing to relent until they found solutions tailored to Kevin’s unique needs, resonate with his mother. “The staff refused to let us leave the hospital until they found things that worked well with Kevin’s body,” she says.
Looking towards the future, Kevin’s family approaches each day with optimism. With plans to navigate each challenge one step at a time, they work towards giving Kevin a better outlook on life.
To others navigating similar diagnosis, Kevin’s mother offers sage advice borne from her own experiences. She emphasizes the importance of having faith, and urges fellow parents to seek support from their medical team. “Ask as many questions as needed,” offers Kevin’s mom. “No question is a stupid question when it comes to the well-being of your child.”
