Treacher Collins isn’t stopping Michael Brown

She was anticipating a robust and content baby. According to all sources, she had made the choice to postpone discovering the baby’s sex. She attended numerous sonograms and regular checkups throughout the nine-month period. Whenever she sang, the baby would become active, gently kicking. As the later months approached, she observed this. She would sing lullabies to put her toddler Allison to sleep and would snugly place her against the left side of her expanding abdomen, settling into an armchair every evening before bedtime. Brittany’s pregnancy with Michael progressed without complications. Brittany had never been aware of the existence of Treacher Collins Syndrome.

She had what she refers to as a “hippie granola birth” without the aid of an epidural, under the care of a midwife, in a birthing center, opting for a water birth.

Brittany handed him their newborn baby when he cradled her against his chest, and she counted his fingers and toes. The doula wiped his face off. “He’s got some courage!” She yelled, expressing her excitement as she finally looked up to determine his gender.

Treacher Collins Syndrome

Then, Michael’s dad inquired about the issue with his ear.

Brittany began to notice some concern in the eyes of the nurses, but her mother was very cool about it. Michael had his face resting on one side of my chest, and his mother suggested rubbing and sticking his ear to see if it would pop up, expecting it to.

“Alright, he lacks an ear,” she stated.

“He has a peculiar small appearance,” the midwife observed.

Brittany overturned him. Michael did not have either ear. He looked a little different, a bit little in fact. His eyes drooped dramatically, closed and his nose protruded a little. At first, Brittany thought he must have some kind of genetic disorder. The second thought was that it might kill him.

“I panicked,” she remembers. “I believed he might pass away. Syndrome to me indicated life expectancy.”

She suddenly realized that he might have a hearing disability and had never been able to witness her singing. It’s possible that he may never get the chance to do so.

Her mother silently searched Michael’s characteristics and instantly, Treacher Collins Syndrome appeared.

He wants his mental capacity and lifespan not to be affected, and he hopes to grow up to become a lawyer or doctor. The best part is, Brittany said she sees the same features in her son when comparing him to a picture of a child with Treacher Collins syndrome.

brittany and michael brown treacher collins syndrome plano texas
Michael brown with his mom, brittany

“That’s all I was concerned about. That he survives,” Brittany states today, nearly two years later.

Collins Treacher syndrome is a rare genetic disorder that affects the development of facial tissues and bones. Some individuals who are affected by it may not even know they have it, as it can be very subtle. However, it can be very noticeable in others, with key signs including a very small chin and jaw, underdeveloped facial bones, little or absent ears, and downward-slanting eyes. People with Collins Treacher syndrome usually have normal intelligence.

Collins Treacher, a young adult from Lancaster, who has dedicated his life to advocating for people with craniofacial disorders, was horrified to read his biological mother’s birth certificate, which expressed no maternal bond and appeared to be a traumatic reaction. Sometimes, traumatic reactions can lead to lifelong dedication in advocating for others. Because Treacher Collins is a rare condition, doctors typically don’t run tests for babies in families.

She doesn’t genuinely mind. However, Brittany is unaware of which branch of the family possesses the Treacher Collins gene, therefore both of Michael’s grandmothers were adopted.

Brittany says, “Michael is incredibly ordinary. Michael and Allison reside in Plano with her. “Don’t misunderstand me, he’s exceptional, but once you lay eyes on him, you realize he’s a typical little two-year-old. It’s truly pleasant that he’s much more relaxed than his older sister.”

brittany and michael brown treacher collins syndrome plano texas
Michael brown isn’t letting treacher collins syndrome slow him down

Learn more: The Extended Farewell.

When they visited Christmas Square in Frisco, he went right up to one of the speakers and laid his cheek directly against it, feeling the music. Allison especially loves music. Michael, on the other hand, enjoys playing with toy cars and trains.

Brittany clarifies, “He has superior auditory perception compared to me when his hearing aids are functioning properly. However, if he is able to perceive it through touch, it is more beneficial for him. Michael lacks ears, therefore his auditory experience differs slightly from that of the majority of individuals.”

The main room is often used as a play area, even when the children are not present, to accommodate their toys and highchairs.

He pouts and buries his face in his mother’s neck, while two curled seashells peek out over his tracheostomy tube (trach) collar instead of ears. He has small, little brown sleepy eyes and a long, beaky nose. He’s unhappy and sleepy, having been woken up from his nap, and nurse Michael brings him in.

Michael has some medical issues. He hopes Brittany won’t need him anymore, as he helps track the trach. He had to stay in the hospital for half a month when he was born. At the same time, he couldn’t eat as a baby because his nose canal is so small.

“I wouldn’t be able to do this as a single mom unless I had nurses. Having a kid with a trach is a lot of extra work.”

Brittany says, “We had a really cool special one, she was like. My mom was a substitute teacher who needed a special experience. Her family was up to the challenge.”

In a rare twist of fate, Brittany discovered that Dallas is home to the Children’s Craniofacial Association (CCA), a national nonprofit organization that addresses educational, emotional, psychosocial, financial, and medical concerns related to craniofacial conditions.

It is advisable to postpone the surgery until he ceases to grow, as both Brittany and he believe. Dr. Michael Fearon, a world-renowned surgeon specializing in pediatric cases, would perform the surgery repeatedly to ensure that his nose canal widens and scar tissue does not obstruct it. Dr. Jeffrey Fearon is Dr. Michael’s colleague and an equally esteemed doctor in the field.

Brittany clarifies, “Several of these children undergo surgeries more than 50 times.” Michael, who has undergone four procedures, underwent one that successfully resolved his cleft palate at birth, while the remaining surgeries have been aimed at inserting and ensuring the proper maintenance of his tracheostomy tube and feeding tube.

Many children receive cosmetic surgeries purely for the purpose of altering their appearance. However, Michael refuses to undergo any such procedures, as long as he remains healthy, even though Brittany does.

She says, “There is a great deal of affection in this place,” she softly adds. She looks around at the toys, the tree, the family photos, and their cozy home. He may want surgery, and it may or may not happen. Being thirteen is truly challenging, I know. It is my dream for him not to desire cosmetic surgery at thirteen. I want to build his confidence so that he doesn’t care if he doesn’t have ears. But when he is old enough, it will be his decision.

“His countenance? What’s amiss with it?” Inquired a child boisterously at a birthday gathering she reminisces. Uncertain of how to safeguard him, Brittany fretted about what to communicate to individuals who gazed or indicated at Michael upon his initial arrival to their residence.

“But isn’t he adorable?” Brittany added, mustering a smile and clarified that there was nothing amiss with him as God had created him in such a manner.

The child wrinkled his nose. “No. He’s not adorable.”

She exclaimed, “He is adorable!” “He is adorable!” She shouted, as she jumped up from her chair and vaulted towards him. Allison, Michael’s older sister, was only two years old.

“Everything lines up. Allison is her protector. She’s an advocate because she is beautiful, eccentric, lively, and bold. She’s supposed to be sassy and spirited. I didn’t understand why she is the way she is until I found out she was born as Michael. Brittany chuckles, saying something else about her.”

Adults often look away and ask about him, afraid to stare. Kids react better to Michael than adults do, however, kids do stare more than adults do.

She explains, “If you don’t have anything else to say and kids are just like ‘Yeah!’ For everything, can you put a positive spin on it? Isn’t it great to hear everything you say being heard and he doesn’t have ears. This is Michael, he’s two and I come up with the name ‘Kids’ for him.”

brittany and michael brown treacher collins syndrome plano texas
Michael brown with his sister allison and mom brittany

Nearly 500 individuals gathered at a Cinemark theatre in Dallas to watch the movie Wonder, which revolves around a child with Treacher Collins syndrome and his family. During this event, Brittany and her family organized a red carpet affair for children with craniofacial disorders, subsequently transforming into local champions overnight.

Brittany declares, “Essentially, it’s a film regarding my son.” “I wept continuously. We categorize. It’s inherent in human behavior. Michael appears dissimilar. You’re causing harm if you avert your gaze from an individual and opt not to engage in conversation due to their appearance. Comprehend that he’s an ordinary child. And he is capable of perceiving your words.”

He is loved so much for his young age and his understanding. Michael and his loved ones have positioned themselves in their living room, watching Michael toss a ball around and enjoying snacks, while they tune in to news crews reporting from all over DFW. Brittany’s kids have received letters from individuals across the world who are part of Treacher Collins network.

Recently, Michael and Brittany have been journeying to various schools in Collin County through the Children’s Craniofacial Association, in order to promote the Choose Kind initiative.

Brittany remarks, “Michael has impacted numerous individuals’ lives.” “This is simply the reality, two children—a mother raising them alone,” she expresses. “Nevertheless, I find him to be a source of motivation in my day-to-day existence.”