In this article, I would like to join my voice to the father of a boy who has Treacher Collins syndrome and who was the reason behind writing it.
Dan Bezzant says and I quote “My heart is in Pieces right now…my soul feels like it is ripping from chest… this beautiful young man has to endure a constant barrage of derogatory comments and ignorance like I have never witnessed. He is called ugly and freak and monster on daily basis by his peers at school. He talks about suicide… he’s not quite 8!”
His pain and frustration were clearly noticed in his words. He addresses other parents to teach their kids compassion and accept people who are different from them. His words were so intense, powerful and went viral on Facebook and reached the whole world. Let me at first tell you all you need about Jackson’s case and many others who have it.
What is Treacher Collins syndrome?
Treacher Collins syndrome is a genetic disorder with deforming in the ears, chin, eyes, and cheekbones. The degree of the syndrome can range from mild to severe.
People with Treacher syndrome can face certain complications like hearing loss. Cleft palate, breathing problems and seeing problems.
This syndrome occurs usually by a new mutation rather than being inherited from a person’s parents.
The genes involved are TCOF1, POLR1C or POLR1D. it happens in about one in 50.000 people. TCS is not curable but the symptoms can be managed with reconstructive surgery, speech therapy, and hearing aids.
The syndrome is named after an ophthalmologist and English surgeon called Edward Treacher Collins. Who described its essential traits in 1900.
Signs and symptoms of Treacher Collins syndrome
The symptoms of Treacher Collins vary from one person to the other. Some people mildly affected while some others have moderate to severe facial involvement.
All cases of TCS are symmetrical and can be recognized at birth.
Most common symptoms are underdevelopment of the lower Jaw and the zygomatic bone. Retracted tongue, poor occlusion of the teeth and in severe cases problems in breathing, and swallowing.
The ear is sometimes small, rotated or malformed while it may be absent entirely in some people. Ear canals can be narrow or absent which why majority of TCS individuals have a conductive hearing loss.
Eye problems including colobomata, in the lower eyelids, part or all eyelashes are absent. Frequent eye infections.
Dental anomalies in 60% of affected people. Breathing problems including sleep apnea.
The facial deformity is what generally noticed but people with TCS have normal intelligence but unfortunately, they are exposed to social and psychological problems in their lives.
And this is the main message of this article, how to support TCS affected people and their families.
I am sure the answer will be “BY TREATING THEM NORMALLY” they went through a lot, they went through painful surgeries they surely do not need your cruel words about their look.
Please teach your children compassion and kindness. Teach your kids how to appreciate the difference. Not only people with TCS but also people with Down syndrome, or with other syndromes. There are 1424 types of syndromes and all these people who could be affected by any type had no choice in this.
Spread Mercy in your Kids’ hearts.
Read Also: All About Hearing Loss