In 2016, I was introduced to MDAS by the bank’s Corporate Citizenship team when Judy wrote in to seek advice for their communication material and ways to effectively pitch to potential donors and volunteers. Response was lukewarm on this outreach so I decided to volunteer and have never regret the decision since. My first meeting with MDAS was a casual meet up and I was not prepared; just knew Judy is on wheelchair. When I met Judy,multiple thoughts went through my head as she approached me, “Should I shake hands? Should I go near her? What should I do? What is Muscular Dystrophy? Why she is in this state?” Although not all my questions were answered but during that meeting as Judy shared more about MDAS and MD, I felt the sudden curiosity to know more than what I was told and that night, I googled on Muscular Dystrophy.The project was a short one, as I provided advice on some tips to improve their communication material and helped to review their campaign videos which were done by another group of volunteers. The video, which was posted on World Duchenne Awareness Day 2016. Started with the beginning statement “What was your aspiration when you are 6?”.as a mother, this statement hit me hard. I asked myself “What kind of aspiration would a child with MD have?”
The scene of the late Desmond Lam appeared, noticing that he can feel the ants but not having the strength to sweep it off , he failed when he tried to blow the ants off.“ERH!” is probably the natural reaction for many healthy people but for kids with MD, this is reality. The fact that they can’t as much to clear their physical discomfort is a daily challenge. I feel for them, I want to know how I can make their life more meaningful. MDAS is the answer. These kids used to be able to walk and now they have difficulty pressing the lift buttons, they require their family to help them with their daily needs; one day, they may have difficulties breathing, they are racing with time. We can help them.
When I showed the video to my children, my son shouted loudly “Desmond!” To my surprise, the late Desmond Lam was my son’s primary school classmate. Remembering Desmond, my son mentioned that back then they were buddies and Desmond was able to walk with some assistance but after completing their PSLE they haven’t seen each other therefore we decided to arranged for these 2 schoolmates to meet up at MDAS and reconnect with each other.
That’s how I started joining more of MDAS activities, most of the time I would help-out at major events like their Flag Day and The Purple Parade. I understood after interacting with them that some of these frustration and anxiety changed when they came to MDAS. Many whom spent their “remaining” years at home as family either are not able to afford to send them for social activities and sadly some felt, they may not make it so just let them stay home. MDAS changed lives. MDAS give dignity and purpose to these children.
An opportunity came in 2017 to fund raised. I suggested to a few colleagues who loved to cook to organize a small charity lunch at office. During the lunch, I shared on MD to those who have not heard about it and despite not getting the chance to enjoy the lunch spread some of my colleagues donated generously. This became a huge motivation and I went on to adopt MDAS for my personal charity pineapple tart charity bake sale as well as involving my kids to volunteer as tutors to help the younger children with their academics.
An activity that I was really touched by was when my friends and I crochet flowers for Mother’s Day and we brought it to MDAS to share with the children.. It was very heart-warming to see the children carefully choosing the “flower”; “her favourite color is yellow”, “I think she likes roses” their little way to show their appreciation.
I’ve learnt a lot from the children in MDAS. Seeing how strong their friendships are and how they always look out for each other and they are like one big family where they eat together , study together and play sports together whenever they meet. Uncertain what tomorrow will bring them, they live each day with passion, positivity and dignity. Overtime, I realized I am not “helping” them but instead they are grooming me to become a better person; a person with more patience and appreciation for others.
Personally I really enjoyed Sherena Loh’s book “Shaped for a Purpose” and quoting from her book”…Although the disease was still in its early stages, I was living as if I was preparing to die.……”
Everyone is here on earth for a purpose, regardless the duration. I’m sure one of the purposes that these children with MD had was teaching everyone about love and living life to the fullest with no regrets.
