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Wednesday September 3, 2014 MYT 12:00:00 AM
Thursday September 4, 2014 MYT 11:47:41 AM
by melinda looi
Melinda getting doused in water during her ice-bucket challenge.
The columnist and her family takes up the Ice Bucket Challenge for ALS awareness.
Last week, thanks to being nominated by actor, emcee and entertainer Edwin Sumun, my team, my family and I, all took up the Ice Bucket Challenge (which you can watch on my Facebook or YouTube channel).
With all the hype surrounding the challenge, I’m sure I needn’t explain what it is about. More importantly, we also donated money online at alsa.org. In addition, my friends and I are planning to donate to a local charitable foundation to help someone locally who’s suffering from Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.
The fact is, although the promotion has created greater awareness and is raising funds for the disease, not everyone donated to the cause. Still, just knowing about the disease is a step in the right direction. Like most people, I wasn’t aware of ALS until I watched one of the first challenges on social media. A motor neuron disease, it is characterised by muscle spasticity, progressive weakness, and difficulty in speaking, swallowing and breathing. Since it is so rare, most organisations deem it “not worthy” of investment in research.
The challenge has been criticised for wasting water, especially when some people are struggling to find clean drinking water. However, the rationale behind the challenge was well-intentioned. Ice and cold water were chosen because the sensation is said to mimic what patients suffering from ALS might feel. As long as we complete the challenge the right way and for the right reasons, it serves its purpose. My kids didn’t know about ALS until we did the Challenge and they watched a video about the disease.
As for my nominations, I’ve decided to nominate Shellah, as well as tai kah jie (big sister) Gillian Hung, tai ko (big brother) Sonny San and batik guru Datuk Tom Abang Saufi, all of whom were my fashion mentors. I still remember standing in front of them, waiting for them to judge my designs ... that was far scarier than the feeling of cold water!
Talking about diseases, I was never aware of blood disorders until my son, Mika, three, started developing bruises on his torso, legs and arms towards the end of last year. At first, we thought nothing of it and put it down to rough play, but when it got worse in February, I took him for a blood test. The results showed that his platelet count was down to six which was way too low, compared to the normal average of 150-400. Fortunately, aside from the low platelet count, he displayed no other serious problems.
Unfortunately, I couldn’t be with Mika (who is a devoted mummy’s boy) during his first two treatments, as I had to travel to Europe for a month. The pain of being away from him at a time when he needed me most was indescribable. According to the doctor, his body was killing his own platelets, something that still can’t be explained by scientists or doctors.
The treatments that he underwent were very expensive, way beyond the means of many families. I sent his report to Germany, to friends of mine who were doctors. They all agreed that the only thing we could do at this point was to wait and see how his body responds to the treatment. Naturally, I panicked and began trying all sorts of traditional medicines (from fresh young papaya leaf juice to porcupine powder) as well as Western treatments, but to no avail.
After waiting and praying for two months, we recently had another blood test and it showed that his platelet count had risen to 113. My son was overjoyed and high-fived me immediately. He could tell that everyone had been worrying about him. However, he’s not in perfect health yet. The doctors are hoping to see the numbers double again in another couple of months, so we are hoping and praying for the best.
Having experienced firsthand how expensive treatments can be, has reinforced my belief that wherever possible, we should help those who are less fortunate.
What many people often don’t realise is that helping goes beyond donating money. One can also volunteer time at a hospital to cheer people up, or better yet, donate blood.
It doesn’t matter if the recipient will never know who you are; do it because it might help save a life. God bless and stay healthy!
> Award-winning fashion designer Melinda Looi tries to marry consumerism and materialism with environmental consciousness. She believes her greatest creations are her children. Send your feedback to email@example.com.
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