By Camile Rocha-Keys
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Videographer / director: Brad Moore
Producer: Camile Rocha-Keys, Ruby Coote
Editor: Sonia Estal
Christian Buchanan from Woodbury, Tennessee, was born with Tessier cleft lip and palate, a rare condition which has only been documented 60 times in medical history.
Tessier cleft lip and palate is the result of the facial tissues not joining properly during development, causing a facial disfigurement and the inability to eat, speak and see.
Christian’s mum, Lacey, told Barcroft TV: “Christian’s condition is called Tessier Cleft Lip and Palate, he has classifications three, four and five which include microphthalmia.
“His condition was caused by amniotic banding syndrome. Fibrous bands can form in the womb and if they attach to the baby they cut off blood flow, so Christian’s banding happened to attach to his face."
When Christian was born, he was unable to eat due to the large gaps on his face where the cleft was and has used a feeding tube since he was four days old.
For Christian, this condition has meant he has never been able to see and it has also affected his learning and speech development. However, these difficulties haven’t stopped him from living a full life.
Lacey explained: “Christian is a very typical six-year-old little boy. He's learning to read, he likes to wrestle with his little brother - all the things that any six-year-old would enjoy.
“The biggest way Christian’s condition affects his daily life is his vision impairment.
“Because he is completely blind, he has to learn to navigate the world in the dark. Our world is made for sighted people and he has to learn to live in it without the benefit of sight and so it takes some finangling and we have to do things a little differently sometimes but its totally doable and he is doing it.”
Christian is home-schooled and attends Special Kids Therapy & Nursing Centre, in Murfreesboro, once a week he is able to learn a variety of skills from learning how to dress himself to his speech.
Lacey said: “Right now Christian is doing a Lego class and US geography class and creative writing. And he is with peers his age and they are all good friends and it has really boosted him socially to help him interact with his peers a lot better.
“In occupational therapy right now he is dressing himself. He just mastered taking shoes off and on."
To date, Christian has undergone seven operations, three of those to reconstruct his face and close the gaps that the cleft created, enabling him to eventually speak and eat properly.
Lacey explained: “Christian will have more surgeries in the future, that’s just the nature of this beast.”
Whilst Lacey hoped she’d be bringing Christian up in a world that understood his condition, she was shocked at some people’s reactions to Christian.
Lacey said: “I was unaware before Christian was born that there is this huge social stigma about being different, looking different, and most people didn’t know how to handle somebody with that type of difference.
“Just recently we had an issue, we were in a store and Christian was playing with a little toy in the shelf and a lady walked by and said, ‘eww.’
"He has heard people making certain comments. He hears kids say things like ‘Why does he look like that? What’s wrong with his eyes?’
"I have always answered children in a very, positive, upbeat tone and I will say things like, ‘Oh, that’s just how Christian was born.' And they will say, ‘Why does he have red eyes?’ I will say, ‘That’s just how he was made. Yeah, he has got red eyes, you know, it’s cool.’
“He’s learnt over the course of a couple of weeks to say, ‘Oh, that’s just how god made me.’ He would say, ‘That’s how I was born and I was born awesome.’ I give him some scripts to say."
As well as being a keen violinist, Christian is currently working towards an orange belt in karate and Lacey has seen her son’s confidence grow.
Lacey said: “I would definitely describe Christian as independent. I remember a few years ago he started saying, ‘I want to do it all by myself mummy.’
“He’s curious and he wants to explore the world and he’s not afraid to do it.”
Lacey worries about her son’s future, but hopes she can raise awareness of disabilities to make the world a better place for Christian and others who have disabilities to live in.
Lacey reinforces: “I want to share my family’s story to raise awareness for disabilities in general and specifically facial differences.
“I want do away with those preconceived notions that people have about what it means to have a disability, what it means to have a facial difference and I hope that I’m fostering an atmosphere of acceptance and understanding and respect for differences so that the world will just be a better place for Christian one day.”