There is no great way to introduce this Trendsetter. Mua and his wife’s journey to establishing Tiny Hearts was a remarkable one. Although it started due to a tragic incident, they managed to make something beautiful in memory of their beloved first born son, Keyaan.
Many of us are probably aware of this lovely couple’s journey. Their bundle of joy was diagnosed with a Congenital Heart Disease within few days after being born.
After numerous tests and a major surgery, Keyaan passed away at the tender age of only two and a half months.
His strong parents having gone through a struggle of inconceivable pain, decided to help other families who might go through that same agony of uncertainty and utter desperation.
Being helpless due to the uncertainty as to what was going on with their beloved son was their inspiration to establish this NGO, to ensure that no other family faced the same helplessness that they once felt.
Keyaan lives on through Tiny Hearts, and also in the hearts of each and every one that this NGO has touched.
This interview was conducted with Co-Founder of Tiny Hearts, Ali Muaz; Mua.
What was your purpose for undertaking this journey?
The main reasons was to create awareness about Congenital Heart Diseases and empower children, people and families implicated to seek timely, quality care and treatment. Secondly, to do everything we can raise awareness about prevention of the disease. When we began our work there were services only we provided to the patients and will still continue with them and so the third aim was to fulfill a service gap to facilitate people towards timely and quality care, intervention and treatment.
We needed to make people aware about this disease. And that need still persists. No one thinks that something like that might happen to them. It might happen to anyone. If it’s not me, it could be you. Simply be prepared.
What programs do you run?
We have 3 major areas of work;
1.CARE FOR TINY HEARTS
Annual medical camp with visiting pediatric cardiologists where we offer free consultation/echocardiography to our CHD patients and also provide fetal screening for high-risk pregnant women. 2017 will mark the Organization’s 9th Camp.
2.HEALTHY HEART PROGRAM
Awareness programs targeting the general population and school children in particular.
Highlights include our Race for Tiny Hearts event 2012, which was a fancy dress run for preschoolers and the annual marking of World Heart Day Program expanded to Atolls in 2016 and marked nationally.
3.SAVE A TINY HEART
Logistical and financial support to patients requiring care and treatment for CHD including prenatal care and assisting towards planned deliveries. Under this program we also conduct fundraising activities at mass scale and at individual/corporate level to support our programs.
When people face such a situation with their babies, even the knowledgeable person panics, they are at a loss and confused as to what should be done.
How did you feel when you first started this NGO?
Honestly this organization is my son. This is all the sincerity and love I have that I can give and share. And I know this is exactly how my wife feels about this organization and doing this work too.
I am happy because my son is living in some form even if he’s not physically with me. I’m no longer scared, but grateful.
How has this NGOs grown?
I didn’t expect this NGO to grow so fast, we are probably one of the most well-known NGOs in Maldives. We began with representing a very small portion of congenital heart diseases if you look at the diseases on a large scale, but in terms of public, we probably hold a great stake because of what we do. People accept and acknowledge our work and they can clearly see what we do. And this is one of the main reasons why we have decided to broaden our mandate and include CVDs (Cardiovascular Diseases) along with maintaining our special focus on CHDs (Congenital Hearts Diseases). We want to use this trust in us to reach out to more people.
When the organization started, we didn’t have an office space for 3-4 years, we moved from one location to another.
Our biggest achievement is that although being a small NGO, we have been able to help people regarding Congenital Heart diseases.
Now, very few people would be at a loss as what to do when their child is diagnosed with a heart disease, we are here to help, we have been able to provide a way to give information and guide them.
It wasn’t easy before. Logistics, funding, transportation and even finance. People who need our help can register and sponsors can call us to verify about the cases.
How do you manage staffs?
Honestly we don’t have staffs, we run on voluntary basis. Our volunteers are our friends and we are a family.
What do you think your beneficiaries would say is the best thing about your organization?
I guess, it would be the fact that they feel close to us.
We look after each child personally….we have separate files for each child.. we visit their homes.. they can always call us.. We are never detached from them….we know their condition and so are very close to them.
What are your Future plans?
In time, our work will probably become less as people become aware and more facilities come in. People won’t need us as much.
We have a cardio unit today, which is a great thing. Back then we didn’t.
We might eventually end up as an overseer or facilitator or even go on to become or facilitate the establishment of a heart hospital. That is our collective dream. It is a distant dream but nevertheless a dream.
What are the barriers in your way?
There are many, but it’s not impossible.
Logistics and transportation is the hardest. Not getting timely care is the worst thing that could happen to a congenital heart disease patient, and restrictions in providing assistance because the child is in an island is heart breaking.
What is the hardest decision the NGO has had to make recently?
We don’t face hard decisions because we work as a team. Every decision is meticulously vetted and discussed exhaustively from all possible angles. We always choose what’s best for the society, in the best interest of our patients and what’s doable, so that focus helps keep things simple. The hardest is always having to respond to people who approach us with heart related diseases that do not fall under our mandate. To tell people in desperate situations that our mandate unfortunately does not cover a particular disease. It is the hardest thing to do.
What was your inspiration to become a fitness Guru?
I was working on and off in the fitness industry.
I officially decided to become a trainer after the incident with my son, didn’t want to be in any other career.
Wanted to be in a position to help people, to live a positive, healthy life. Maybe this doesn’t make a lot of money but I don’t care
What was your dream job growing up?
I actually thought I would become a Civil Engineer. At one point I thought I would do something mechanical such as engineering. I like getting my hands dirty.
What things in your life would you give up in an instant if it got you to an even better place than you are now?
I don’t want to change anything. I want to stay where I am. Things can’t get any better than this!
Ever think of changing your career?
No. because there’s a lot to offer and a lot to learn in this field. It gives me satisfaction enough to last a lifetime.
This is an evolving industry it needs more people. People may not believe this field could be a career, but believe me it is.
Greatest strength: I will fail, but I will keep trying
Greatest weakness: I am very scared of needles….I give blood every 3 months, but the moment I see a needle, I freak out!
Who is the most important person in your life?
My mom. She raised me as a single parent.
My wife. I became who I am today, because of her
What were you like as a teen?
I was a jerk. I was very disciplined, but very short tempered.
If you could be any age for a day, what would it be? Why?
I would go back to 2008. I would be 27 years, that was when my son was born, and I would get to hold him again
What is the message that you want to tell our community/world?
As long as people feel that they are appreciated for what they do, they will do it, doesn’t matter what. So reach out and tell people they matter and what they do is important and valued.