Most parents express extreme disappointment and bewilderment when the child's they've had turns out to be slightly different than the rest of us. It takes a great deal of courage, determination and intellect to overcome the shock, regret and revulsion at the sight of a baby born with Harlequin ichthyosis. It's a hereditary condition that results in profoundly different development of the skin's growth and pigmentation. A 22 year old girl shares her impressive journey facing her unique skin condition.
The 22 year old has the same bodily features, intellectual prowess and the aspiration to succeed in life as the rest of us. The only thing slightly different about her is itchyosis graves, the skin condition responsible for her unique physical appearance.
Horrified at the sight they saw, her parents were left without any empathy for Mui and dumped her at the hospital for adoption. All seemed lost for the baby until a beacon of hope in the form of two German parents showed interest in the girl.
While the German couple paid several visits to Mui at the hospital and eyed her up for adoption, but they never followed through. The visits stopped and all looked grim for the baby again. She was sent to a home for the mentally challenged.
Mui may have had a skin condition that resulted in a profoundly different physical appearance than the rest of us, but she was not intellectually challenged and had her wits about her. But fortune arrived when the German couple finally decided to adopt Mui. "There was no way we could have walked away and left her." Said Tina, the mother.
Doctors were skeptical about the longevity of Mui's life. Tina and Rog, who formally adopted Mui at age 3 were told that the girl would not live very long. But despite the grim future, the expats provided a loving environment for Mui to grow up in.
Despite her skin condition, Mui's adoptive parents never let the idea of being different ever occur to her. It was society that cultivated the feeling of alienation in the young girl. And when she began to pick up cues from the bewilderment of passerbys, she realized how different she really was.
Any child or teenager who is slightly different than the norm is destined to face ridicule and crude remarks in their life. At times it can take its toll on them and Mui was no different. She went through significant emotional trauma in her life.
Harlequin itchyosis left Mui's skin as extremely thick, dry and flaky, giving her the appearance of having fish scales. Her red body is also open to infection. Here's the kicker though, the girl cannot sweat, but she can shed tears.
To make her life even more difficult than it has to, cyber bullies under the veil of anonymity would constantly harass the brave young woman over social media. This had such terrible impact on her that she was driven to the brink of suicide.
They would pass snide remarks such as "you shouldn't have been born" and other cruel statements which made Mui skeptical about people. She became wary around people who were nice to her, fearing they would turn feral any second.
An extremely cruel person posed as Mui's friend and bullied her for over 10 months. Because this person was close to Mui, they had access to secret details about her life and used them to give targeted remarks.
At some point the police had to get involved to expose this person. The details shook Mui to her core when she found it was her very own friend. It didn't take long for Mui to leave school afterwards, her faith with humanity was gone.
Despite the crippling and painful disease, the questionable behavior of society and the terrible reaction of people around her, Mui decided to do something positive with her life. And thus began her journey as a prolific public speaker.
The 24 year old young woman not only has a full time job but is also plays sports. One of her favorite games is rugby for which she spends countless hours out in the sun. She eventually hopes to become an international rugby referee.
She has become a breath of fresh air for everyone. Mui's skin condition and the ugly behavior of society no longer dictates her life. Her brave battle with life continues to inspire millions and those facing similar conditions have found the perfect role model in Mui.
