Jed fights asthma

By Kusumanjalee Thilakarathna

This week on the Little Stars cover is Jed Fonseka, a six-year-old warrior who not only fights asthma but also takes pride in raising awareness about asthma to support other kids struggling with the illness every day. He works really hard to raise awareness on respiratory diseases and dreams of making a progressive impact on people in Sri Lanka. Together with his parents and with the help of his doctor, he leads the campaign #jedfightsasthma. This is what Jed shared with Little Stars about his journey.

Jed, tell us about yourself.

My name is Jedidiah Fonseka. You can call me Jed. I just turned six years old last week. I attend OKI International School, Primary Branch, in Kandana. And I’m in Grade Two. I have one sister. Her name is Noya. We have a pet dog named Tubby. I enjoy colouring, playing with Lego, and watching movies. My favourite movies are Sing and Sonic.

Tell us about your favourite things.

I have a lot of favourite things. I absolutely love Marvel superheroes, and my favourites are Captain America and Spiderman.

I go for piano classes and I can play just a little. As a hobby I love to act for TV commercials.

Can you tell us more about your acting career?

I started acting when I was 18 months old. In my first corporate profile for a client I had to eat a piece of papaya, and the director said I did a job well done. Ever since, I have done many TV commercials, corporate profiles, and modelled for clothing brands.

In the description of your Facebook page, you’ve said that you are a child influencer. What do you mean by that?

An influencer is someone who can make an impact on the community. I have worked really hard to raise awareness on respiratory diseases. I want people to know the severity of breathing problems such as asthma and lung disease.

I hope to one day make an impact in Sri Lanka where people would know how to respond when children or adults have an asthma attack and that asthma can be controlled with proper medications and lifestyle changes.

Although asthma is not a rare problem among kids, we rarely speak about it. Why did you choose to speak publicly about asthma and raise awareness?

Asthma is not the only respiratory disease. We have diseases such as COPD (chronic obstructive pulmonary disease), asthma, etc. that cause problems in the lungs. I was born with severe respiratory distress syndrome, and was on a high frequency ventilator (HFV) for four weeks. My stage was critical as due to the lack of oxygen (desaturation), I had a brain haemorrhage and also cardiac problems.

Our lungs are very important for all our organs to function. The lack of oxygen in our body puts a strain on our other organs, which leads to other complications.

Wheezing is common in a lot of children, but asthma is not. An asthma attack is very painful and is a chronic lung disease. I wanted to raise awareness about asthma because all children deserve good medical care and we have to somehow equip our government sector hospitals with the facilities to help us asthmatic kids.

How has your experience educating other people been? Tell us about the projects you’ve done so far.

So far, I’ve noticed a lot of people reaching out to my Ammi and myself, asking us about the doctors who take care of me and about the treatment I am on. I’ve also noticed that people are now asking us about the pros of using inhalers and controlling wheezing and asthma.

My Ammi does a lot to help me raise awareness and always encourages me to understand that even though I am in a constant battle with a respiratory problem, I am still a kid and I can have a normal childhood with proper precautionary measures in place and proper healthcare.

Because of my Facebook page and the awareness campaign, a lot of people have acknowledged that they need help and have even understood that some myths brought down by our forefathers are not true. My #JedFightsAsthma campaign has touched the hearts of a lot of people who want to support my goal to raise awareness amongst the general public.

Who is supporting you?

My Ammi and my Dada. Even my little sister, Noya. My Ammi helps me with my social media page, and my dada designs my #JedFightsAsthma t-shirts.

It is not easy, as my asthma attacks are sudden, and my parents have to keep a close and watchful eye on me all day long. But, they do it with no complaints and always reassure me that I am special and I am loved. My paediatric chest physician Dr. Channa De Silva and my immunologist Dr. Suranjith Seneviratne are fantastic too. They are always in touch with my Ammi and encourage me to stay fit and active, even though I sometimes find it hard to do so.

How are you catching up with your schoolwork with all the hospital visits and awareness campaigns?

My school is awesome. My Branch Co-ordinator is Mrs. Christine Palmon and she understands my health problems. Along with the teachers, they get together and give me extra attention. I miss a lot of school due to my asthma attacks and recurrent lower respiratory tract infections (I’ve had 10 episodes of pneumonia in the last five years), so the teachers take photos of the notes I miss and send them over to my mother, who helps me with my schoolwork. The Primary Branch teachers have been educated on my health problems and they know what exactly to do in case of an emergency.

I also wear a special badge to school. It has my Ammi’s mobile number along with information about my medicines which I carry in my schoolbag. This is important because sometimes I may not be able to tell someone when I’m having an attack, but my badge has all the information they would need.

Are you currently working on any projects?

Right now, I am focussing on the #JedFightsAsthma campaign as I really want to raise awareness amongst the general public about respiratory diseases.

But, I did a shoot for a TV commercial for a bank last week and a few other commercials in the last couple of months too.

My main focus as of now is to get #JedFightsAsthma to the leaders of my country and influencers who will listen to my little (squeaky) voice and help make a change in the lives of children with respiratory diseases.

Do you have any tips for kids who are living with respiratory problems on staying safe and maintaining their health?

Children with respiratory diseases are just like other kids. Yes, we are a bit different as a lot of activities and foods are limited to us.

My main advice is to stay active. Running, riding a bicycle, swimming, yoga, and gymnastics are fantastic activities which help our lungs expand. Also, food intake is vital. Healthy foods such as vegetables, and proteins such as chicken, fish, and eggs are great. Ice creams and cold food and drinks are something we asthmatics cannot have, but an occasional, once-in-a-blue-moon sip of chocolate milkshake will do no harm. After all, we make memories, and the best memories for kids have chocolate in them!

What are your future goals?

I want to be a doctor. I have always wanted to be a doctor to help little children like myself. I want to pursue a career in acting as well. I think I can do both.

But for now, I want to be healthy and help other kids fight this battle with me.

Do you have any final message for our readers?

We only live once, so make the most of it – this is something my Ammi always tells me. So, she lets me play with dirt, encourages me to do activities that all other children do, and always makes sure I live a normal life as much as possible.

This is for both me and my sister.

My sister and I learn so much through play, and that is what children should be doing. Learning through play!

Respiratory diseases are on the rise with the rise in pollution in the environment, so my advice to everyone is to stay safe, and prevention is always better than cure.