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In the first part of our journey, we shared the initial struggles and uncertainties we faced as Andre was born and diagnosed with Pyridoxine-Dependent Epilepsy (PDE). In this blog post, we will delve deeper into the second phase of our journey, highlighting the milestones, interventions, and setbacks that have shaped the last 10 years with Andre.
Early Milestones
At just 9 months old, Andre achieved a significant milestone that brought a glimmer of hope- he started sitting independently. It was a momentous occasion, as it marked a step towards mobility and independence. However, walking didn’t come as quickly. Andre took his first independent steps at 19 months, showcasing his determination and resilience.
Speech development presented another challenge on this journey. While most children start speaking around the age of 2, Andre began speaking at the age of 3. This delay in speech was a source of concern, but we remained patient, hopeful, and supportive as we navigated this unique path.
Early Intervention and Public School
To provide the best possible care and support for Andre, we engaged with California’s early intervention therapy programs. These crucial services were instrumental in addressing his developmental needs and ensuring he received the appropriate therapies and interventions.
At the age of 5, Andre embarked on a new chapter in his educational journey as he started public school Kindergarten. However, this transition was marked by significant struggles. It was evident that the traditional educational environment was not equipped to cater to his specific needs.
Finding the Right Fit
Recognizing the need for a more tailored approach, we made the pivotal decision to transfer Andre to June Shelton School in Dallas, TX, an institution specializing in addressing the unique needs of students with learning differences. This transition was a turning point in his education, providing the specialized support he required to thrive.
Psychological Evaluation and Diagnoses
As Andre continued to grow, we sought a comprehensive psychological evaluation when he reached the age of 10. This evaluation led to two significant diagnoses: ADHD and processing disorder. These diagnoses shed light on the challenges he faced, and with this knowledge, we could better tailor our approach to support his development.
Strabismus and Surgical Challenges
Andre’s journey has also been marked by his struggle with strabismus, a condition affecting his eye alignment. Since the age of 6 months, he was under the care of Dr. Kenneth Wright, who had been closely monitoring his Pyridoxine-Dependent Epilepsy (PDE) condition. However, due to the uncertainties surrounding the success of surgery, we had not proceeded with it.
During the challenging times of the COVID-19 pandemic, we faced a dilemma. Unable to fly to Dr. Wright for his care, we sought assistance from another doctor in Dallas who believed he could improve Andre’s strabismus through surgery. Despite the hope this offered, the surgery unfortunately did not yield the desired results and, in fact, made the condition worse.
Conclusion
Our journey with Andre has been marked by a series of triumphs and challenges. Each milestone achieved, every diagnosis received, and the decisions made along the way have shaped our family’s path. We continue to move forward with hope, determination, and the unwavering belief that Andre’s unique journey will lead to a brighter future. Our story serves as a testament to the resilience of families facing rare conditions like Pyridoxine-Dependent Epilepsy (PDE), and we share it with the hope that it may inspire and support others on their own journeys.
Thank you for sharing Andre’s journey with us!
Andre is such a great kid and growing into a man with a heart of gold. His gifts and intelligence are uniquely special. He is blessed to have a mom who is so attentive and able to provide the care he needs which will in turn bless so many other people!