Jono Lancaster & Treacher Collins Syndrome

30 year old Jono Lancaster’s outreach with his genetic disorder serves as inspiration to us all!

Jono Lancaster, 30, a native of the United Kingdom is a uniquely gifted individual. I’m sure some of you may have heard of the young man born with the catastrophically disfiguring genetic condition known as Treacher Collins Syndrome (TCS). You may wonder, “Why in God’s name would someone call such an unfortunate mutation a gift?”

Well, I didn’t say TCS was a gift. The young man’s ability to overcome his disorder and reach out to others to educate them and give them a much needed sense of community, as he did recently, is the evidence of his gift.

A little background
TCS is a rare genetic mutation which is seen in approximately 1 in 50,000 births. The disease has been described as far back as ancient Rome. Dr. Edward Treacher Collins systematically studied and described its key features for the medical journals of the time, naming the disorder after himself.

The problem actually is caused due to many different genetic mutations. One of the most common ones is a defect on the 5th chromosome of the developing baby. All the mutations lead to the same outcome though; an arrest in the development of the face and neck while the baby is developing in the womb.

The face of a developing child develops by the fusion of two large masses of tissue called the Pharyngeal Arches. There is one on each side of the head of the developing fetus. They start to move toward each and eventually fuse to form a recognizable face somewhere toward the end of the second trimester. Special proteins in the nucleolus of these developing arches are necessary for this migration. When these proteins are mutated, the face fails to fuse and we end up with a situation where the skull, eye sockets (orbits) and jaw bones are poorly developed. The technical and more generic term for this kind of disorder is a ‘Craniofacial Dysostosis’.

Technical terminology aside, the disease causes very obvious disfigurement of the face and even the neck at times. In our image conscious society such disfigurements can be a death knell for young people trying to cope.

Jono Lancaster not only learned how to cope; he thrived! He now spreads his strength to others afflicted with his disorder.

Recently Jono travelled to Australia to meet young Zachary Walton. This 2 year old has the same diagnosis as Jono and his parents have been worried about him since birth. Zachary immediately seemed to have bonded with Jono though. I don’t know if it’s because he met someone with a similar problem or because of Jono who is just that cool a guy. We may never know. I salute Mr. Lancaster for his outreach and his strength and I hope people like him with various disabilities will step forward to show their gifts to the rest of the world.