Couple Adopts a Red-Skinned Baby with Slim Chances of Survival, Raising Her into a True Champion

Born with a rare skin condition, there were doubts about the girl’s chances of survival from the start. Meet Mui Thomas, the central protagonist of our story today. Abandoned by her mother at birth due to her distinctive appearance, Mui faced adversity and hurtful remarks. However, amidst the challenges, two individuals recognized her uniqueness, ultimately assisting Mui in achieving a noteworthy milestone in her life.

She was abandoned when she was just a little girl.

Mui Thomas, hailing from China, entered the world amid circumstances that would shape the trajectory of her unique life. Abandoned by her birth parents, who swiftly severed ties with her, Mui confronted an uncertain future. In 1994, Tina and Rog Thomas intervened, becoming the foster parents to the red-skinned little girl in need of a home.

Their decision was not without challenges, as medical professionals painted a bleak picture of Mui’s future. “Mui will die in infancy,” experts warned the couple. Informed of the limited life expectancy of the infant, the Thomases embarked on their fostering journey, fully aware that their time with Mui might be short-lived. The medical community echoed a grim sentiment, advising Tina to redirect her aspirations toward a more conventional family-building with her spouse.

Despite the prevailing pessimism surrounding Mui’s prognosis, Tina and Rog embraced their role as foster parents with unwavering resilience. The couple defied expectations, creating a nurturing environment for the child who was deemed unlikely to survive infancy.

Against the odds of her slim chances of survival, the couple made the courageous decision to fight for Mui.

When Mui reached the age of three, Tina and Rog decided to formalize their bond by choosing to adopt her into their family. This decision was no small matter; it signified a commitment to confront the challenges posed by her condition. Despite doctors foreseeing that she might not survive beyond her early years, Tina and Rog stepped up, providing the strength she needed at that vulnerable age.

Tina vividly remembered the first time she laid eyes on Mui, who was just one and a half years old at the time. As initial foster parents, the couple was astonished to witness Mui not only defy the expectations set by her condition but also grow and thrive into a spirited toddler. This revelation sparked a profound and immediate connection between them. Tina reflected on that moment, saying, “She came into the room, and I could see this spirit. I could see she wanted to have fun. She wanted to get on with it.”

Reflecting on the unfolding path of the years, Rog shared a poignant moment of realization. “We met her in a hospital,” he recounted. “My wife told us that we’d look after our daughter for about a weekend, and that was 20 years ago, so it has been a very long weekend.” In those words, Rog encapsulated the enduring love and steadfast commitment that turned what was initially intended as a brief respite into a lifelong journey.

Mui’s journey is a testament to the indomitable human spirit, defying the odds imposed by a rare and challenging condition. Born into a world where her very existence seemed an insurmountable challenge, Mui had to confront the physical manifestations of her condition (Harlequin ichthyosis) which is a severe genetic disorder that affects the skin. Infants with this condition are born prematurely with very hard, thick skin covering most of their bodies. The skin forms large, diamond-shaped plates that are separated by deep cracks (fissures).

Despite the adversity she faced from the moment of her birth, Mui was raised with a resilience that became the cornerstone of her existence. Her upbringing instilled in her a determination to conquer life’s challenges, even when the chance of survival seemed slim. As she grew, so did her strength, both physically and mentally, being one of the 20 known people worldwide diagnosed.

They opted for adoption instead of pursuing natural conception.

Tina and Rog had initially planned to expand their family through natural conception. However, they chose not to adhere to the “expected” course and steered their path in a different direction. Life often deviates from a set plan, and its twists can lead to unexpected blessings. In their case, life brought them Mui, and they, in turn, “gave life” to her.

Yet, beyond their own decisions, fate also played a role in intertwining their paths. On August 12, 1994, Tina had inscribed these specific words in her diary, marking the commencement of their unique family journey: “Mui will be our little kid to take care of,” and that’s precisely what unfolded.

Despite facing harsh treatment from others, Mui did not allow it to discourage her.

Mui’s toughness isn’t just about handling the physical curveballs her illness throws at her; it’s also about dealing with a society that can be downright nasty. Right from the start, she’s had to navigate judgmental looks and not-so-friendly remarks.

Even with her parents being her rock growing up, giving her the backup she needed to keep moving forward, her journey wasn’t a cakewalk. Mui had to deal with a bunch of haters who couldn’t see past the surface.

High school, supposed to be the time of your life, turned into a bit of a battlefield for Mui. People threw some seriously mean words her way, like telling her she shouldn’t have been born. Imagine carrying the weight of those words on a young soul already trying to handle a condition that makes her stand out. The constant teasing took its toll, leaving Mui feeling pretty beaten down and lonely.

The pain Mui experienced wasn’t solely confined to her classmates; even adults, who should have known better, proved equally heartless. A bus driver, assuming the role of judge and jury, audaciously declared that Mui was unwelcome on their bus.

The rejection extended beyond the schoolyard, permeating the broader educational landscape. In Hong Kong, Mui faced the threat of being barred from school, and within her own neighborhood, school doors were being firmly shut.

However, in the face of exclusion and the icy treatment she received, Mui refused to succumb to bitterness. Instead, she stood up against the current of prejudice and ignorance. Through it all, Mui’s journey stands as a testament to the power of resilience and the determination not to let the narrow judgments of others define her.

She grew into a beautiful and strong champion.

While Mui’s academic journey reached its conclusion, it didn’t signify the end of her remarkable story. Despite enduring indescribable pain, she orchestrated a turnaround, crediting her success to the unwavering support of her parents. In an unexpected twist, she found acceptance in the most unlikely of places, forever altering the course of her life.

As she recalls, “I found something that was both inclusive and welcoming. I discovered rugby.” Encouraged by her father, Mui immersed herself in this sport, which, beyond serving as a distraction from her skin condition, transformed into a platform where she could advocate for people with visible differences.

Her inspirational story has touched many lives, and when her family chose to break their 20 years of silence, the response and support were overwhelming.

Through her platform, “The Girl Behind the Face,” Mui has established a sanctuary of encouragement and love. Those grappling with their own conditions find solace in her courageous journey, expressing deep gratitude for the positivity she emanates.

Acknowledging that people with Mui’s condition typically have a shorter life expectancy, her parents continue to hold onto hope that she will continue to defy the odds. Mui stands as a true survivor, carrying the enduring love from her adoptive parents and aspiring to inspire others through her remarkable journey. Now, at 30, she wears a radiant smile, showcasing not only her triumph over challenges but also the resilient strength that defines her.

Strength and love can make overcoming adversity possible, even when it seems insurmountable. Many stories resonate with this sentiment, including that of a young man with a rare skin condition who serves as a guide for others, helping them embrace their uniqueness.