When Dawson Santiago was learning to walk, his progress came much later than expected, raising concerns for his family. Dawson’s mom, Lillian, shares, “Dawson hit every milestone on time, but just walking was past 18 months, so it raised some red flags, especially since I worked with children.” This was especially alarming for his mom, who worked with children and had a keen eye for developmental milestones. She knew something wasn’t right. Thankfully, with the help and guidance of Nemours Children’s Health primary care pediatrician Dr. Lehman, Dawson began physical therapy at Easterseals. While his initial diagnosis of low muscle tone provided some answers, the truth turned out to be far more complex.
As Dawson worked hard in therapy, his progress seemed to plateau, raising more questions than answers. His physical therapist took notice and suggested an MRI to explore further. “She told us that Dawson was making progress but then just stayed the same,” his mom shared. “We explained to Dr. Bean that for about a year, Dawson had been complaining about a burning and itchy pain in his thighs.” Dr. Bean recommended a brain and spine MRI to rule out mild cerebral palsy, but the results revealed something far more serious—a tumor on Dawson’s spine, stretching from T8 to L2.
Within hours of the diagnosis, the Santiago family was surrounded by a team of specialists who outlined the next steps. Lillian recalls, “We met with Dr. Piatt, a neurosurgeon at Nemours Children’s Hospital in Delaware. He said, ‘If I’m going in, I’m taking it all out.'” The following day, Dawson underwent a 5.5-hour surgery to remove the tumor. The family anxiously awaited updates. “A couple of days later, we learned that his tumor was rare, and they only see children with it once it is large. It’s called LGG, low-grade gliomas,” recalls Lillian. Fortunately, Dawson’s tumor was benign.
The surgery marked the beginning of a new chapter. Dawson transitioned into intensive rehabilitation, adjusting to life in a wheelchair and working tirelessly to regain his strength. The family’s world had shifted, but their focus on Dawson’s health and determination remained relentless. “Our normal might look different than it was before,” his mom reflected, “but most importantly, Dawson is healthy now.”
The journey hasn’t been easy. Dawson’s ongoing recovery includes physical and occupational therapy, with the ultimate goal of learning to walk again. His family is confident in his ability to overcome every obstacle. His mom shares, “Dawson is stubborn, strong-willed, and resilient. So our faith is strong.”
The Santiago family is grateful to Nemours for their support during this challenging time. Lillian shares, “My favorite thing about Nemours Children’s is that all the staff are very caring, understanding, and supportive. They have not only helped my husband and me through everything but, most importantly, they have been a great support for Dawson.” The Nemours team has been diligent in explaining everything to Dawson and his family, providing them with comfort and support.
Now, as they prepare to return home and reunite with their two other children, the family is filled with hope for the future. Dawson’s mom knows the road ahead will be long but believes in her son’s and their family’s strength. She offers heartfelt advice for others facing similar challenges: “In the beginning, it’s rough, and you may feel confused and have a hundred questions. Ask them. Never lose faith and continue to be strong.”
Dawson’s journey is one of courage, resilience, and the relentless support of a family and care team determined to see him thrive. His story inspires everyone who meets him and reminds us of the power of hope and perseverance.
