35th Anniversary Edition
‘Yeah, That’s Good:’ Thomas Fights Back
Thomas Byrne (right) shares a light moment with his brother John.
Thomas’ path to independence took an unexpected turn around 2019 with the loss of his ability to speak, sleep, move and other functions in the last few months of high school. After a lot of research, we connected with and visited Brian Skotko, a physician with Massachusetts General Hospital, who diagnosed Thomas with a little-known condition that would later be called Down syndrome regression disorder (DSRD). Not long after, Jonathon Santoro, a physician with Children’s Hospital Los Angeles, discovered that the trigger for Thomas’ DSRD was autoimmune encephalitis (inflammation of the brain). With much bravery, perseverance and hard work, Thomas slowly and steadily tolerated medical treatments and continues to regain his speech, motor skills and other functions that the autoimmune encephalitis took from him. Currently, he attends Mira Costa High School in a transition program, enjoying his friends and projects and continues on a path of slow, but steady improvement.
When I asked Thomas what he looks forward to, he smiles excitedly and conveys that he looks forward to adulthood, and to getting back to his old self. He plans to spend more time with his friends and to find a job where he can help those in need or work with animals where he can make a positive impact on his community and the world. Thomas is a natural caretaker. When he senses that one of his classmates is struggling, he does not hesitate to lend a hand and offer support. Because Thomas was fully included at our local Catholic school and was outgoing in our community, almost no one there is a stranger to him. He is known for attending to lonely or worried friends, barking dogs, or crying babies. Thomas’ aide, Chuck Fox, says that when Thomas says things like “That’s right!” or “Oh, sure,” or “Yeah, that’s good,” he helps his peers and staff members around him to adopt a more optimistic outlook on life. Thomas’ light is returning and our community cannot wait!
We’re still learning, but we’ve already seen him express his emotions a little more. His personality is coming out again.
John, Thomas’ older brother, has also engaged the community in understanding more about DSRD.
“I never thought I would compete in an Ironman,” John told me recently. Once he realized that a challenging endurance race could be a way to support his brother, after being frustrated about the lack of tangible ways to help, John decided that fundraising for and racing in the Ironman Santa Cruz in 2021 would be a way to personally, actively support Thomas.
After the race, it was clear that there was a community that wanted to support Thomas. In an effort to build a vehicle to allow those individuals to directly support the research surrounding Thomas' Regression Disorder through charitable donations, John created The Agape Fund (theagapefund.org). It serves as a way for those who want to support Thomas and the Down syndrome community to do so, particularly focusing on research into DSRD. Subsequently, John recruited four friends to join him in the Ironman Alaska race and to join The Agape Fund team, and now leads a group of six friends who will race in the Ironman Arizona in 2023.
The fund has so far supported two projects focused on Down syndrome, with more than $100,000 in donations. Most significantly, we've supported Jonathan Santoro, a pediatric neurologist who is leading the first-ever clinical trial in DSRD at Children’s Hospital of Los Angeles, with a $5 million grant from the National Institute of Health. The Agape Fund also supported research led by Dan Gordon, an exercise physiologist at Anglia Ruskin University in Cambridge, United Kingdom. Gordon's work seeks to quantify how physical exercise affects mental fitness in individuals with Down syndrome.
John believes that by allocating donation dollars to research focused on the conditions that Thomas experiences, we can potentially unlock a leverage point in a rather complex healthcare system. If we can support physicians to find a potential solution to Down syndrome Regression Disorder, the knowledge from that study could help an even greater number of people over time.
Our family is proud of Thomas and grateful for his recovery, and we look forward to John competing in the Ironman Arizona in November, 2023 and raising more funds to support the Down syndrome community.
A Family’s Journey of Inclusion
Original article from Impact, 2018/19
By Margaret Byrne
Beginning with kindergarten, inclusion in American Martyrs Catholic School for our son, Thomas, brought him rare social and academic opportunities, community, contentment, flexibility, and happiness. With mutual trust and respect, we worked hand-in-hand with Thomas’ teachers, administrators, and an outside team to support his inclusion – a first for a student with intellectual disability at the school – which benefited both Thomas and the student body.
Our team creatively and honestly designed a program that reached out to Thomas and brought him into the classroom and school-wide community. We set annual goals, attended team meetings, took instruction from therapists, modified curriculum, and planned for events. It was sometimes successful and sometimes experimental, but for the most part it was working. Thomas’ brother and sister at the school knew Thomas was safe and happy. They could check on him during the school day. Thomas thrived and his inclusion changed mindsets and opened up hearts.
Thomas was quickly embraced by the entire school. A behavioral aide supported Thomas the first few years and offered support and education to the teacher and the class. Thomas’ modified curriculum did not stop him from being fully included in class – reading novels, giving oral presentations, participating in group projects, and participating in science lab and computer lab. With a little planning and creativity, Thomas went to camp on Catalina Island and in the Santa Barbara mountains with his classmates. He was on the football and basketball teams and made strong, lifelong friendships. He made his First Communion and First Penance with his classmates. He aced a science test in which he named over 30 bones by memory. Throughout his time at American Martyrs, Thomas was fully accepted as a student, just as he was.
At the same time, Thomas’ classmates and teachers were students of Thomas. They learned leadership, compassion, and patience. They learned not to judge Thomas by his label because they knew there was so much more underneath. They gently touched Thomas when he needed to focus. They understood him when his words were unclear. They were keenly aware if Thomas was planning to run and chase the birds. They encouraged Thomas to look them in the eye. They were more proud of his success than he was. They knew Thomas – his sense of humor, as well as his intelligence, kindness, and athletic ability.
A surprise outcome of Thomas’ inclusion was the wealth of knowledge shared by his team. This information made teachers and students better. It became clear that other school families had children who also needed support, whether they had speech or learning differences, or anxiety, and it was no longer taboo to talk about it. I truly believe that as a result, other children were able to get support that they otherwise may not have gotten.
Thomas graduated from American Martyrs, a K-8 school, at the end of 8th grade. When he received his diploma, his classmates and friends who stood by him since kindergarten stood up and rewarded his accomplishment with a standing ovation. You could feel the love and attachment. It was hard to imagine that we ever questioned our decision to include Thomas.
Our efforts to enroll Thomas in a local, inclusive high school were unsuccessful. Nothing existed in our town, public or private. We traveled to Bishop England High School in Charlestown, South Carolina, to see their Options program, made numerous calls to high schools around the country, read books and researched. We presented the inclusive Options program to our local schools. Nothing went forward in our area despite meeting after meeting. It was disheartening. We did not have an inclusive high school for Thomas. Shortly before school started, Dr. Megan Burton offered Thomas a spot in the Options Program at Cathedral Catholic High School in San Diego. Thomas began his freshman year as a fully included student. In his two years of high school, Thomas has had a peer mentor for each of his general education classes. He was voted onto the Homecoming Court, he swims with the swim team, and he plays tennis. He goes to dances and works out with the baseball team from time to time. He goes out socially with his peer mentors. Thomas’ self confidence and speech have increased dramatically.
Thomas is a fully involved Cathedral Catholic High School student as he sits side-by-side with his peers in history class. No, we did not move and Thomas does not board at Cathedral Catholic. My husband and I take turns driving Thomas the 100+ miles to San Diego from Manhattan Beach each weekday. It is a sacrifice, but worth it.
“I Have Great Friends”
Original article from Impact, 2018/19
High school junior Thomas Byrne has been fully involved in all areas of Catholic school life since kindergarten. When he was asked about his school experiences as he prepared for the start of the fall 2018 school year, he shared these thoughts:
Thomas, when you were younger you went to American Martyrs Catholic School. What did you like about going to that school?
I liked my seeing my friends and my sister and brother at school. I liked my teachers and seeing Father John. I liked playing on the basketball team and the football team and going to church. I have very good friends from American Martyrs.
When you graduated from American Martyrs, you and your parents had to work really hard to find the right high school for you. And you did – you found Cathedral Catholic. What makes Cathedral a good school for you to be at?
My mentors are good for me. They help me in classes and are my friends. Cathedral Catholic treats me like all the other students and I can be part of fun and interesting activities and classes.
Tell me about the friends you have at Cathedral – what kinds of things do you like to do with them?
I have great friends at Cathedral Catholic. We go to the zoo, the beach, and have dinner together. We work out with the baseball team, swim with the swim team, and play tennis with the tennis team. We go to dances and football games. I was elected to be on the Homecoming Court.
What classes do you like best at Cathedral?
My favorite classes are science, art, history, reading, and religion.
As you go back to school this fall, what are you looking forward to doing this year?
I am very excited to see my friends and meet my mentors and teachers. I look forward to anatomy and history classes. I think I will work with the football team this year.
Contributed by Margaret Byrne, Thomas’ mother, who assisted him in formatting his responses here.