Honor Madeleine’s Legacy: Join us in supporting youth pursuing special education and families facing disability challenges. Together, we can make a difference.
Madeleine Elyse Morgan Bochat was born November 22, 1999, in Webster, Texas. She is the third of four total children in our family. At two months of age, she was diagnosed with a rare, neurological disorder called Aicardi Syndrome first described by French, neurologist, Dr. Jean Aicardi in 1965. There are only 1,000-5,000 documented cases in the world. Madeleine’s markers for the disease included infantile spasms, agenesis of the corpus callosum, retinal lacunae, plus more.
Aicardi Syndrome is a rare neurological disorder primarily affecting females, characterized by the absence or underdevelopment of the corpus callosum, which connects the two hemispheres of the brain.
Aicardi Syndrome's exact cause isn't known, but it's thought to occur randomly rather than being inherited. Some researchers believe it may result from genetic mutations or issues during fetal development.
Aicardi Syndrome often causes seizures, delays in development like not reaching milestones at expected times, vision problems such as lesions on the retina, and issues with the structure of the brain.
Treatment involves addressing symptoms and offering support. This may include seizure medications, developmental assistance programs, and therapies like physical and occupational therapy, along with specialized education programs tailored to individual needs.
The Madeleine Bochat Memorial Foundation assists Goliad High School youth (and surrounding counties) pursuing a college degree in special education and related fields with scholarship opportunities. Special education teachers are unique people. They are people with compassion, tenacity, and vision. We believe that every child deserves access to education that meets their unique needs, and we are committed to providing the resources and support necessary to make that a reality. Our foundation includes scholarships and mentorship for aspiring special education teachers. Long term vision includes purchase assistance for adaptive equipment for special needs youth.
Our passion is sharing our knowledge of raising a special needs child through Madeleine’s life and her story. We are here to assist with questions, information and support for parents struggling with navigating the world of special needs.
The Madeleine Bochat Memorial Foundation is a Christian based; non-profit organization dedicated to supporting youth entering the special education teaching profession and provide support to families raising a child with unique disabilities.
Offering scholarships and mentorship exclusively to aspiring special education teachers from Goliad High School (and potentially other surrounding high schools), fostering their development and acknowledging their invaluable contributions.
Providing support and guidance to families raising a child with Aicardi Syndrome or other unique disabilities, sharing Madeleine's journey as a source of inspiration and practical knowledge.
Advocating for inclusive education to ensure every child has access to tailored, quality education. Long-term vision includes providing assistance for the purchase of adaptive equipment.
Join us in making a difference in the lives of youth pursuing special education careers and families raising children with Aicardi Syndrome or unique disabilities. Your donation to the Madeleine Bochat Memorial Foundation will directly support our mission to provide scholarships, mentorship, and resources to those in need.
Madeleine’s story is one of resilience and love, despite the challenges she faced with Aicardi Syndrome. Your contribution will help us continue her legacy by empowering aspiring special education teachers and offering support to families navigating the complexities of raising a special needs child.
Together, we can ensure that every child receives the education and support they deserve. Donate now and be a part of our mission to make a meaningful impact in the lives of others.
For additional information about Aicardi Syndrome, its symptoms, treatments, and support resources, please visit the Aicardi Syndrome Foundation website at aicardisyndromefoundation.org. Explore their comprehensive resources to learn more about this rare neurological disorder and how you can get involved in supporting individuals and families affected by Aicardi Syndrome.
From navigating the challenges of special needs parenting to supporting special education initiatives, we’re here for you. The Madeleine Bochat Memorial Foundation offers assistance, information, and support to families and individuals dealing with Aicardi Syndrome and special education.
Madeleine Elyse Morgan Bochat was born November 22, 1999, in Webster, Texas. She is the third of four total children in our family. At two months of age, she was diagnosed with a rare, neurological disorder called Aicardi Syndrome first described by French, neurologist, Dr. Jean Aicardi in 1965. There are only 1,000-5,000 documented cases in the world. Madeleine’s markers for the disease included infantile spasms, agenesis of the corpus callosum, retinal lacunae, plus more. For more information about Aicardi Syndrome, please visit the Aicardi Syndrome Foundation website at aicardisyndromefoundation.org.
The doctors at Texas Children’s Hospital in Houston, Texas gave Madeleine a projected 3-year life expectancy. We were devastated. Then, Jesus, came to us. He told us, “We would be okay, He would help us and that He would be with us.” From there, it began the wonderful and treacherous roller coaster ride of Madeleine’s life with Aicardi Syndrome.
The ride took us through the peaks and valleys of raising a special needs child. It’s a world that no one willing walks into. Additionally, it is a world that is completely different from what the world considers “normal.” It is a world full of things that you must learn, things you must do and decisions you must make that you never thought you would. It’s a world of unbelievable joy and sadness rolled into one. It was Madeleine’s life, and we were called to lead our family and her through it. All with a child that was non-verbal and developmentally an 18-month-old.
When Madeleine was three years old, we entered the early childhood intervention program. This program opened up the world of vision, physical therapy, special adaptive equipment and more. Madeleine turned six and we had to make the tough decision about public school. We always wanted Madeleine to have access to as much regular life as possible. We chose to put her in public school in the Cypress Fairbanks ISD, a suburb of Houston. Cy-Fair was one of the largest school districts in Texas at that time.
In 2004, job and life changes dictated the move out of Houston to a small town in Texas named Goliad. We left the comfort of a big school district with plenty of resources and assistance to a very small school district that had never had a student with Madeleine’s level of disability. God continued to tell us to let people experience Madeleine, so we put her in Goliad ISD.
Madeleine became a superstar of the district. Teachers embraced her in classes and adapted new styles of teaching to try and reach her. Students fought to sit by her, comb her hair, help with her backpack, sit, and eat their lunch with her and more. When she transitioned from elementary school to middle school and then the high school, parties were given for Madeleine. New teachers learned to teach Madeleine even though they had never experienced a student like her.
Madeleine was blessed to have the same aide, Helen Mata, and the same bus driver, Bob Morales, for 18 years in Goliad ISD. A crowning achievement was attained in 2021, when Madeleine graduated from Goliad High School.
Throughout the years of her life, we traveled everywhere with Madeleine. Every two years, the Aicardi Syndrome Foundation hosted a conference for Aicardi Syndrome families from across the world and this was our opportunity to travel across the country as a family. We attended conferences in Louisville, St. Louis, Minneapolis, Colorado Springs and more. Madeleine also went on family cruises with us to the Caribbean and Mexico. Her last trip was to Ruidoso, New Mexico.
In the spring of 2023, Madeleine went into the hospital with a routine illness. Complications arose quickly, and Madeleine passed away peacefully on May 4, 2023…. more than 20 years after her predicted life span. Her life was a blessing to so many people along the journey. Even though she was non-verbal, Madeleine had a magnetic attraction from people that just wanted to know more about her. We used that attraction as a means of ministry. We used it as an opportunity to speak to them about Jesus and His grace, comfort, and peace we have received throughout the continual journey of Madeleine’s life. Thank you, Jesus, for those opportunities all during Madeleine’s life and even more so now that she has passed away.
