Treacher-Collins Syndrome is a rare genetic disorder that affects the development of the face and skull.
This condition affects 1 in 50,000 people and is caused by mutations in the TCOF1, POLR1C, or POLR1D genes, which provide instructions for making proteins involved in the growth and development of tissues in the head and face.
People with Treacher-Collins Syndrome typically have underdeveloped or absent facial bones, which can result in various physical abnormalities, including:
- Small, abnormally shaped ears
- A small jaw and chin
- A cleft palate or lip
- Drooping or slanted eyes
- Hearing loss
The severity of these abnormalities can vary widely among individuals with Treacher-Collins Syndrome, even within the same family.
Because the condition affects the appearance of the face, individuals with Treacher Collins Syndrome may face discrimination or bullying from others who do not understand the nature of the condition.
Communication difficulties due to hearing loss can also add to these challenges.
However, some celebrities have successfully overcome these challenges and risen above them.
Celebrities with Treacher Collins Syndrome
1. Jono Lancaster
Lancaster is a British motivational speaker. Born with Treacher Collins Syndrome, his birth parents abandoned him when he was only 36 hours old.
Jean Lancaster, a single mom who was 43 at the time, adopted him at two weeks old and provided him with the care and nurturing he needed.
In his 20s, Lancaster attempted to establish contact with his birth parents, but they were not interested in reconnecting.
Jono is admired worldwide, as he makes an effort to visit every child born with Treacher Collins Syndrome and provide them with the love they deserve.
He advocates for TCS patients, urging all to embrace them because they are also humans.
On an Instagram post, Lancaster spoke of how people with facial differences are misrepresented in the media industry.
He stated that no films show people with differences having a happy ending, which could cause people with disabilities to shy away from pursuing careers that put them on the big screen.
2. Alison Midstokke
Midstokke is a 38-year-old American actress, activist, and model.
Denise and Rick adopted her while she was a few weeks old.
To realize her modeling dream, Midstokke underwent over 100 reconstruction surgeries to fix her face.
She was also speech and hearing impaired, making endless trips to the hospital.
She began her modeling career at the age of 15.
As a child, she had a supportive family and friends.
But living in New York City, she has had to deal with social stigma.
She continues to inspire people living with disabilities all over the world.
Her most notable work was in the 2018 film Happy Face.
3. Jeremy Gabriel
Gabriel is a 26-year-old French-Canadian singer.
He was diagnosed with Treacher-Collins Syndrome at the age of 6 months.
He was born deaf and had deformities in his skull, head, face, and ears.
He began singing at 6 after receiving a bone-anchored hearing aid.
Throughout his career, he has performed for prominent public figures such as Celine Dion and Pope Benedict XVI.
4. Nathaniel Newman
Newman is an 18-year-old American boy living with Treacher Collins Syndrome.
He is the author of the memoir Normal: One Kid’s Extraordinary Journey.
Unlike most people born with this condition, Newman was lucky enough to grow up in a loving family of four.
His mother is the author of the memoir Normal: A Mother and Her Beautiful Son.
Despite her surprise upon seeing a newborn who resembled an alien, Magda Newman fell in love with her son a short while after his birth.
Despite his near-death experiences, Newman leads a healthy life and enjoys a good relationship with his schoolmates.
Treacher-Collins Syndrome is a disability that takes a toll on affected patients.
Each of the celebrities mentioned above has had to deal with different challenges in their lives.
Their stories and experiences continue to inspire people across the globe.