Inspiring Milestone as Boy with Rare Syndrome Takes First Steps

In a heartwarming development that has captivated hearts across the country, seven-year-old Lincoln Burge from Derby, Kansas, has achieved what many thought impossible. Born with a rare genetic disorder called PCDH19 epilepsy, Lincoln recently took his first independent steps. This extraordinary milestone marks a pivotal moment in his ongoing journey with a condition that affects fewer than 1,000 people worldwide.

The Journey to Lincoln’s First Steps

Lincoln’s path to walking has been anything but straightforward. His condition, which causes seizures and developmental delays, presented significant challenges from an early age. Despite these obstacles, Lincoln has shown remarkable determination.

His mother, Jessica Burge, describes the moment as nothing short of miraculous. “We never knew if this day would come,” she shared. “Every specialist told us to prepare for the possibility that Lincoln might never walk independently.”

The breakthrough came after years of intensive physical therapy and unwavering family support. Lincoln’s therapists implemented a specialized program that focused on building core strength and balance. Additionally, they used innovative techniques to help him understand the complex motor patterns needed for walking.

Understanding PCDH19 Epilepsy

PCDH19 epilepsy is an extremely rare genetic disorder that primarily affects females but can impact males in specific cases. The condition results from mutations in the PCDH19 gene on the X chromosome. This gene plays a crucial role in brain development and function.

People with this syndrome typically experience:

• Seizure clusters that begin in early childhood
• Developmental delays affecting speech and motor skills
• Cognitive challenges ranging from mild to severe
• Behavioral issues including autism-like symptoms

According to the National Organization for Rare Disorders, the prevalence of PCDH19 epilepsy is approximately 1 in 300,000 individuals. The condition presents uniquely in each person affected, making treatment approaches highly individualized.

The Power of Specialized Therapy

Lincoln’s success story highlights the importance of dedicated therapeutic interventions. His treatment plan combined several approaches that worked together to help him achieve this milestone.

Dr. Sarah Mitchell, Lincoln’s neurologist, explains: “We implemented a multi-faceted approach that addressed both the neurological and physical aspects of Lincoln’s condition. This included medication management for seizure control alongside intensive physical therapy.”

Key Components of Lincoln’s Therapy Program

• Aquatic therapy to build muscle strength without gravity resistance
• Specialized gait training using adaptive equipment
• Sensory integration techniques to improve body awareness
• Targeted exercises to strengthen hip and core muscles
• Use of supportive bracing at critical developmental stages

Lincoln’s physical therapist, Maria Gomez, points to consistency as a crucial factor. “We worked with Lincoln three times weekly for over four years. The progress was often measured in tiny increments, but we celebrated every achievement, no matter how small.”

Furthermore, the therapy incorporated play-based elements to keep Lincoln engaged. Therapists found that activities disguised as games resulted in longer attention spans and greater effort during sessions.

A Family’s Unwavering Dedication

Behind Lincoln’s achievement stands a family whose commitment never wavered. Jessica and her husband Tom converted part of their home into a therapy space. This allowed them to continue exercises between formal sessions.

The Burge family also connected with other families navigating similar challenges through the PCDH19 Alliance, an organization dedicated to supporting those affected by the syndrome. These connections provided emotional support and practical advice that proved invaluable.

“Other families who’ve walked this path before us were our lifeline,” Jessica explains. “They understood our challenges in ways even the best doctors couldn’t.”

Lincoln’s two older sisters also played significant roles in his progress. They regularly joined therapy sessions, turning exercises into family activities. This approach normalized therapy as part of everyday life rather than a separate medical intervention.

Financial and Emotional Challenges

The journey hasn’t been without significant hurdles. The Burge family faced numerous insurance battles to secure coverage for Lincoln’s specialized care. Many treatments initially fell outside standard coverage parameters.

Additionally, the emotional toll of caring for a child with a rare disorder created challenges. Jessica openly discusses the importance of finding support systems for caregivers.

“There were definitely dark days when progress seemed impossible,” she admits. “Finding other parents who understood these feelings helped tremendously. We learned to celebrate tiny victories and redefine our expectations of success.”

The Science Behind the Milestone

Lincoln’s achievement represents more than personal triumph. It also highlights evolving understanding within the medical community about neuroplasticity—the brain’s ability to form new neural connections throughout life.

Dr. Robert Carlson, a pediatric neurologist specializing in rare disorders, notes: “Cases like Lincoln’s challenge our previous assumptions about developmental potential in children with certain genetic conditions. His progress reinforces the importance of persistent therapeutic intervention, even when improvement seems unlikely.”

Research suggests that for children with neurological conditions, consistent therapeutic input during key developmental windows can produce meaningful results. Lincoln’s case may eventually serve as an important clinical example for other families and medical professionals.

The Role of Adaptive Equipment

Specialized equipment played a crucial role in Lincoln’s journey. Initially, he used a gait trainer—a wheeled device providing partial body weight support. This allowed him to experience the sensation of walking while building necessary muscle memory.

As his strength improved, therapists introduced ankle-foot orthoses (AFOs) to provide stability while allowing more independent movement. The transition between supportive devices was carefully managed to balance assistance with the need for Lincoln to develop independent skills.

The final breakthrough came when therapists determined Lincoln was ready to attempt walking with only minimal hand support. Within weeks, he progressed to taking several steps entirely independently.

Looking Forward: Lincoln’s Continuing Journey

While celebrating this remarkable achievement, the Burge family remains realistically optimistic about future challenges. PCDH19 epilepsy is a lifelong condition requiring ongoing management.

Lincoln continues to experience seizures, though their frequency has decreased with optimized medication. His therapy now focuses on improving walking stamina and tackling other developmental goals, particularly in communication and self-care skills.

Jessica emphasizes the importance of maintaining perspective. “This milestone is massive, but it doesn’t mean the end of our challenges. We’re learning to balance celebration with preparation for whatever comes next.”

Advice for Other Families

The Burge family offers several insights for others navigating similar journeys:

• Trust your instincts about your child’s capabilities
• Find medical professionals willing to think beyond traditional prognoses
• Connect with other families through condition-specific organizations
• Document progress with videos and photos to recognize gradual improvement
• Advocate persistently for necessary services and accommodations

They particularly emphasize the importance of finding care providers who see possibilities rather than limitations. “The doctors who helped us most were those who said ‘we don’t know’ rather than ‘it’s not possible,'” Jessica notes.

Community Response and Support

The Derby community has rallied around Lincoln in remarkable ways. When news of his first steps spread, neighbors organized a celebration parade past the family’s home. Local businesses contributed to a fund covering therapies not fully covered by insurance.

Lincoln’s school incorporated adaptive equipment to support his new mobility skills. Teachers worked closely with his therapists to ensure consistent approaches across environments. This coordinated effort maximized his chances for continued progress.

The family has also used social media to document Lincoln’s journey, creating awareness about PCDH19 epilepsy. Their videos of his first steps received hundreds of thousands of views, bringing attention to this rare condition.

The Bigger Picture: Hope for Rare Disease Communities

Stories like Lincoln’s serve a vital purpose within the rare disease community. They provide concrete examples of possibility that can inspire other families facing similar diagnoses.

Dr. Mitchell emphasizes this point: “When families receive a diagnosis of an ultra-rare condition, the lack of information can be devastating. Having real examples of children achieving meaningful progress helps combat the isolation and fear many parents experience.”

The Burge family hopes sharing their story will connect them with other PCDH19 families worldwide. They believe these connections strengthen collective knowledge about effective treatments and interventions.

Conclusion: A Step Toward the Future

Lincoln’s journey from diagnosis to his first independent steps embodies hope, perseverance, and the power of specialized intervention. While his path forward will continue to present challenges, this milestone represents a profound victory.

For the estimated 300 million people worldwide living with rare diseases, stories like Lincoln’s provide valuable encouragement. They demonstrate that even with conditions affecting tiny populations, meaningful progress remains possible.

As Lincoln continues developing his newfound mobility skills, his family remains focused on the philosophy that has guided them thus far: celebrating each achievement while preparing for the next challenge.

Jessica sums up their perspective: “Lincoln has already proven what’s possible when we refuse to accept limitations. We can’t wait to see what he’ll show us next.”

Call to Action

Do you know someone affected by a rare condition? Consider reaching out with words of encouragement or practical support. For those interested in learning more about PCDH19 epilepsy or supporting research efforts, visit the PCDH19 Alliance website. Your awareness and advocacy make a meaningful difference for families navigating these challenging journeys.

References

• PCDH19 Alliance – Support organization dedicated to improving the lives of children and families affected by PCDH19 epilepsy
• National Organization for Rare Disorders – Comprehensive information about PCDH19 epilepsy
• Child Neurology Foundation – Resources for families dealing with pediatric neurological conditions
• Global Genes – Advocacy organization for rare disease awareness and research
• National Institute of Neurological Disorders and Stroke – Research information on epilepsy and related conditions