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Weak heart, but strong willed

10 -year-old old Margao-based Shannon Fernandes was a premature baby after many heart stoppages in the womb and has a chip implanted to monitor his heart functioning at all times. He acted in the film titled ‘Mama! I got your cigarettes’ that was screened at the 2nd Anti Tobacco Film Festival 2018 and the film was also acknowledged at the national level (All-India category). NT BUZZ finds more about him


Most of us feel depressed when we are ill and don’t live in the moment or enjoy the little things but 10-year-old Shannon Fernandes has been living his life despite all his illnesses. He still pursues his passion in acting and skating, though his doctors have restricted these activities including swimming as they exert his heart. But Shannon continues to live life to the fullest and has learnt to swim on the quiet and even mastered roller skating.

Shannon has a rare congenital heart disease and his doctors are yet unable to pin point the diagnosis.  He underwent a surgery three years ago, to have a microchip (known as a loop recorder) implanted near his heart to record its electrical activity. He also suffers from ‘Kleine-Levin’ syndrome also known as sleeping beauty syndrome – a very rare sleep disorder wherein the patient sleeps excessively (can even be a few days, non-stop) owing to which he also has cognitive or mood changes. He also gets asthmatic attacks with internal wheezing. He requires constant care and medications and everywhere he goes, people have to be made aware of his medical condition.

Shannon who is studying in class 5 at The King’s School, Margao has acted in ‘Mama! I got your cigarettes’, a short film with a social awareness message that was screened at the 2nd Anti Tobacco Film Festival 2018 and the film was also acknowledged in the national level (All India category). He says: “I always loved to act and it was my dream come true. Acting in the film was fun as I love acting. Sir Les and Delwin did it like a therapy for me to see if the condition of my heart changes by allowing me to do whatever I love to do. And all the actors handled me with a lot of love and affection by monitoring and guiding me.” The same film is being revised wherein Shannon is in the lead role and they plan to send it festivals all over India. It’s the story about how in today’s modern world the parent’s are influencing children in a way which is harmful to them in the long run.

Shannon met director and screenplay writer Les Menezes and assistant and casting director of the film, Delwin De Souza who is a qualified doctor but does not practice any longer as he decided to follow his passion of film making. They met by accident at Jojo’s Big Banner Production Studio, in Vasco, last year when they overheard his story and offered to help. Les says: “I had a script that I was working on which could be used as a therapy for him, develop his confidence, acting skills and forget his illness. The project has worked for him; he had gone to doctors, physiatrists but they did not succeed as much as this drama therapy has succeeded for him,” adding that you have to know how to handle him and adjust the script so he can handle it.

This is not Shannon’s first attempt at acting, he did try his hand at drama but his colleagues would tease him with nicknames like ‘golgappa’, ‘mottula’, ‘cyborg’, ‘chotta bheem’ and the list goes on. “I was promised a role in a school play but reluctantly left at the last moment because the teasing was affecting my heart. I was very disappointed that day. I longed to get back to my passion,” adds Shannon.

Apart from avoiding strenuous activities he has to use caution while exercising, eating and has to regularly visit his doctors in Bengaluru. “I have to cycle but with somebody’s guidance. I cannot consume junk food, soft drink or juice. My mama doesn’t buy food from out; she prepares everything in the house.” His Bengaluru visits are scheduled every three months for a check up and to collect his medications.

His illness has been difficult on his family financially as they have to visit four hospitals in Bengaluru. His mother Suzanne says: “I have two elder sons and they have to be educated. But at the same time I cannot ignore my responsibility towards Shannon. We are struggling but my husband Ravi Fernandes tries his best to make ends meet.”

Speaking of how Shannon is handling his health situation, Suzanne says that he is okay with it but he is always worried about her. “He feels if he was normal like other children his mama would always be healthy. He is always more concerned about my health.” Shannon is very much aware of his health condition because his doctors talk to him freely about his illness.

Shannon shouldn’t exert himself but he still does, to which Suzanne says that they keep telling him to slow down and even in school they take very good care of him. He is kept a watch over in school to avoid playing in the sun or exerting his body too much. The school has to take his mother’s permission to if he wants to partake in sport activities. “The school has a doctor, nurse and my son is well looked after,” says Suzanne.

Explaining what special care and caution she observes when dealing with him, Suzanne says that she has to be very caring towards him and cannot shout or scold him. She has listen to him and cannot take any other child or anyone close to her in his presence. “He feels ‘my mama loves the other child more than me’. I cannot even pamper my pets in front of him. He will say to me ‘you love the cat more than me no mama’,” she narrates. In school his teachers love him a lot and he in turn takes what the teacher says as the truth.

Suzanne has been through a lot of difficulties when Shannon was a premature baby. Her family and friends supported her. Her biggest help were her sons Shaun and Shane who at that time were 6 and 5 years old respectively. “My husband was sailing and at first we didn’t know my son was suffering from so many problems. After one month and twenty days we got to know about it. But we are blessed to have Shannon in our lives,” concludes Suzanne.

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