A Genetic Condition that Doesn’t Diminish Emotional Pain
Treacher Collins Syndrome is a rare genetic disorder that affects facial development, resulting in impairments in breathing, hearing, and vision. While the condition affects the growth of facial bones and tissues such as the cheekbones, jawbone, ears, and eyes, it does not impact a person’s intelligence or emotional capacity.
People with Treacher Collins Syndrome may have slanted eyes, little eyelashes, and malformed ears, and it occurs in approximately 1 in 50,000 births. Despite the physical challenges of the condition, individuals with TCS can still experience emotional pain and rejection.
Jono Lancaster, born in October 1985, was diagnosed with TCS at birth. Doctors told his parents that he would never be able to walk or talk. When he was only two days old, they decided to give him up for adoption.
Jean, a dedicated foster parent with 30 years of experience, found herself drawn to a small infant who required care after being left in a hospital. Two weeks after his arrival, Jean fell in love with the baby and became his foster mother. Over time, Jean’s love for the child only grew stronger, and five years later, she formally adopted him.
Despite the years that have passed since that fateful day, the child has never forgotten Jean’s unwavering love and affection. Although Jean may not be the tallest woman around, her heart is undoubtedly the biggest. She has given so much of herself to not only this child but to many others in need of love and care.
Jean, a single mother in her 40s, felt a deep sense of failure every time a child was transferred to a new foster home. Despite her fears, she accepted employment that led her to change the life of one particular child – a young boy who would become her son.
That boy was Jono, who was eventually adopted by Jean and given a wonderful family in Claire and Stephen. Jono describes Jean as his hero and an angel who was sent to him at just the right time.
Growing up with Treacher Collins Syndrome, Jono struggled to accept his appearance and avoided mirrors for many years. However, he credits his optimistic attitude and his refusal to let others’ assumptions about him define his life for his success and accomplishments.
Now 32 years old and in a long-term relationship, Jono uses his personal experiences to educate and inspire others impacted by Treacher Collins. He is a passionate supporter of those affected by the condition and has spoken at schools and events worldwide. Jono is proud of who he is and what he has accomplished and is a testament to the power of determination and a positive attitude.
If given the opportunity, would Jono choose to have facial reconstruction surgery? His answer is a firm no. To Jono, his appearance is part of his identity, and he believes that he was created this way for a reason.
So, what changed for Jono? Despite still being the same person with Treacher Collins Syndrome and the same face, he has gained a new outlook on life. With the support of his incredible family and friends, Jono has shifted his focus from feeling sorry for himself to embracing his unique appearance.
Jono now has confidence in himself and loves the way he looks. Rather than hiding, he chooses to share his beautiful smile and piercing blue eyes with the world. He has decided to live his life to the fullest.
Jono’s experience shows the power of positivity and self-love. With a positive attitude and a love for who you are, the world around you can improve. There is nothing more limiting than a negative outlook, and Jono’s story is a reminder to embrace ourselves and live life to the fullest.
Watch the BBC documentary “Love Me, Love My Face” below to learn more about this amazing man, whose optimistic approach enables him to speak out for others.
Please DONT NOT FORGET TO TELL US Your Thoughts AND TO SHARE with others to encourage a good outlook and a love of oneself