We come to learn as a collected society that not all heroes have bulging muscles, perfect hair or a symbol on their chest. Some wear bright yellow jackets with oxygen tanks on their backs while battling raging fires, others wear camouflage while riding around in tanks in a different country, and some wear a badge. Then there are the heroes who don't seek out to become one. Leaving behind a legacy of inspiration, hope and strength that can rival any comic book hero. This is the story of one such hero.
Brody Meaux was a playful child with an ever-present smile. His parents, James "Jimmy" and JoAnn Meaux, said he was a blessing. As he grew, Meaux's parents noticed he was not meeting developmental milestones such as walking, crawling and talking. Meaux did eventually learn how to walk at age 4 as his parents desperately searched for answers for the delays in his development. By the time Meaux was around 7 or 8 years old, he had lost the ability to walk and had a G-tube inserted to help him take in food. Seizures that began at age 6 grew progressively worse. That's when the Meauxs began their search outside of Louisiana and found themselves at Texas Children's Hospital in Houston, where they met world-renowned geneticist Dr. Huda Y. Zoghbi.
In 1999, Zoghbi and her lab identified the gene MECP2 as the cause of Rett Syndrome and in 2004, she discovered that overexposure of the MECP2 gene in mice lead to neurological problems and seizures — similar mannerisms as Meaux had. Within a week, Zoghbi diagnosed Meaux with MECP2 Duplication Syndrome. He was the first boy ever tested and diagnosed with this disease. He was also Zoghbi's first case of MECP2 Duplication Syndrome. The Meauxs traveled between Houston and their home in Calcasieu Parish so that doctors could learn from Brody. He was used as a model for this disease as well a participant in research trials and natural history studies.
MECP2 Duplication Syndrome is a neurological and developmental disorder that occurs when there is an extra copy of the MECP2 gene, which helps regulate brain function. Too little or too much of it can cause severe physical and mental impairment. It primarily occurs in males due to it affecting the X-chromosome but there are cases of girls developing the disorder, as well. Non-verbal communication, low muscle tone, inability to walk, recurrent respiratory infections and seizures are just a few of the features the MECP2 Duplication brings. Many die before the age of 20 due to respiratory issues. The more of the MECP2 gene that is affected, the more severe the disorder will be.
Because MECP2 Duplication was relatively unknown and there was so little research, Meaux's treatment choices were very limited. Because Rett's is very similar to MECP2 Duplication, the family was directed to the Blue Bird Circle Rett Center at the Baylor College of Medicine and Meaux was treated as someone with Rett Syndrome.
JoAnn Meaux said she also connected with a family whose son had the same diagnosis in Pennsylvania via Facebook and they chatted back and forth about their experiences. As Meaux grew older, the family started to hold family conferences in Houston with families from across the world whose children were also affected by MECP2 Duplication, where they would speak and help these families with the same issues that the Meaux's had gone through themselves.
James Meaux said throughout it all, Brody continued to be the same playful and happy person. He loved playing games on the computer and could use the mouse to go to his favorite websites. He especially loved Barney.
"We thought that was kinda old and outdated but not to him. He loved Barney," James Meaux said.
Whenever he saw Barney, Meaux "would get excited and kinda flap his hands."
While Meaux never talked, he would make sounds and his parents could understand what he was talking about. He was also in 4-H, where he showed rabbits and he loved to take care of them and watch them run around. He showed them for two or three years until his seizures began to worsen.
James and JoAnn Meaux said they constantly asked themselves, "Why our child? Why did this have to happen to him?"
"You go through that emotion for a while," James Meaux explained. "And then you learn to deal with, you know, the blessings that God gave us and we really counted him as a blessing. An angel that God gave us. We really loved having him."
James Meaux said his son taught them patience, to enjoy the small things, and gave them a new perspective on everything.
"He was our only child, we don't have any other children so he was kind of our life," he said.
Brody Meaux passed away at the age of 20 on May 25, 2019. Despite his short time here, he left a legacy that will continue to impact those for years to come, is father said.
As the first person to ever be diagnosed with MECP2 Duplication Syndrome, he opened up new doors to researchers and doctors while giving hope to families who are also looking for answers and maintaining a light that many could see. His proud parents are continuing his legacy by continuing to meet with families afflicted by this disease and helping and guiding them.
"We find a lot of comfort in helping others as Brody would want us to," James Meaux said.
James, JoAnn, and Brody established Brody's Bunch, which hosts fundraisers to help raise money for the continued research for drug trials that could potentially slow and even reverse MECP2 Duplication. To donate or want to learn more about Brody, this disease and what is being done to reverse it, visit http://www.401project.com/brody-meaux.