Sunday 21 October, 2018

WATCH: Boy born with facial disability overcomes it with a smile

A schoolboy with Treachers Collins syndrome, who has drawn inspiration from the Hollywood movie Wonder, is using his smile to challenge perceptions of the rare condition by appearing in a 2018 calendar.

Eight-year-old Gabriel Strinta Elias suffers from the genetic disease which alters the formation of tissue and development of bones in the face.

 

 

The youngster, who lives with his family in Ceu Azul, south-east Brazil, has been through 21 operations – the first when he was still only a few weeks old.

He is set to feature in the first calendar of its kind in Brazil that shows children with facial disabilities overcoming their challenges with a smile.

Gabriel who has a twin sister Marina, who doesn’t have the illness and a younger brother, Emanuel, five-years-old, says he can’t wait to show ‘just how happy he is to be who he is’.

The lad is the opening smile in January and the initiative is aimed at raising awareness of children with facial disfigurements and drumming up funds to support families struggling with health care costs.

Uiara Camila Farias, one of the organisers of the 2018 Rede Profis calendar explained: “This year’s calendar is filled with beautiful stories. There are patients from all over Brazil living with many different challenges and overcoming their difficulties with fantastic victories.

"Each month has a new ‘smile’. The stories of the children are thrilling and inspiring and are told by parents and the patients themselves.

“It shows that to overcome the challenges of life, what matters most and throughout is the ability to smile.”

Treachers Collins syndrome affects one in every 50,000 babies worldwide.

Craniofacial surgeon, Cristiano Tonello, who has been treating Gabriel at Centrinho, a centre of excellence in Sao Paulo which specialises in the rehabilitation of craniofacial anomalies said: "The syndrome is characterised mainly by the fusing of the bones of the face, such as flatness, small jaw, and chin, leading to respiratory and aesthetic problems in children.

"Complications can vary from mild to severe, with deformities of the ears, eyes, chin, and cheekbones.”

In Gabriel’s case he has had trouble with his breathing, eating, listening and speaking.

According to mum, Andreia, 35, her son ‘battled through all these obstacles in the first few years of his life and is winning simply because of his personality.’

Andreia, a social worker and mother of three said: “Gabriel is an amazing child, he is very chatty and happy. He doesn’t complain about thesurgeries because he knows that each one makes him better.”

Gabriel and Marina, are the result of in vitro fertilisation and was a highly anticipated pregnancy.

Andreia who is married to Gledson, 40, a pharmacist, recalled: "When we found out we were having twins, we were over the moon.

“It was a normal and peaceful pregnancy but they were born at 32 weeks.

“Marina left intensive care after three weeks, but Gabriel stayed because he couldn’t breastfeed.”

The first signs of Treachers Collins syndrome was discovered at 20 days when doctors diagnosed the newborn with a cleft palate. At six weeks

Gabriel had a tracheotomy, a surgical procedure done to ease breathing due to the deformity of his jaw which caused respiratory distress.

He was discharged at seven months.

Adriana said: “None of these complications have stopped Gabriel from living life to the full. He has boundless amounts of positive energy. We didn’t think he would walk but he swims, rides his bike, runs, does kung fu, is learning English and doesn’t see himself as different from other children.

“He has been with the same classmates since starting school and they have grown with him. They have seen him go through many surgeries and they are protective of him.

“So far he hasn’t faced any discrimination or name calling but we can’t rule out what will happen in the future as he gets older.”

Gabriel’s twin sister played an important role in her brother’s development.

Marina said: "Mum didn't understand Gabriel when his spoke. But I did and I used to tell her what he was saying.”

Her brother continues to have speech therapy and physiotherapy.

Dr. Tonello added: “Gabriel is a smart boy. This is not a neurological disorder.

“In the future he will need more surgery to achieve harmony of the face and dental occlusion to correct his teeth and jaw. But he has a bright future ahead of him as a normal boy,” he confirmed.