Today’s Story

Nataniel

Nataniel

Photographer, content designer and trader

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Currently I am working on a project with a Japanese guy, a project to deliver a the first cash recycling machine in Indonesia. He is from Japan company that provide the hardware and my company provide the software. He is nice guy, alway sharing information and help me if I encounter a problem. He is also good in learning Bahasa, what a shame I can not speak Japanese even a little.

We have been worked on this project almost a year. The machine is on public piloting phase now, hope everything is going smoothly. Well, this morning I and him are supposed to standby in a pilot area, at Gandaria City Mall. We were called that there will be an event today so we have to ensure the machine is on best performance. But for some reason, the event is postponed to middle of March. We only meet the generous guy who offered us drink and also a beautiful SPG. haha.

After getting confirmation, we decide to have a coffee at Starbucks, since today they have a discount for 57% regarding to BCA anniversary.  Anyway, my today’s expense is endorsed by BCA. haha.. During our coffee time, I want confirm to him why he go to Swiss last week. He told me that he had a conference about health, but not detail. I think he joins a kind of MLM because he is good in networking and encourage people. #stereotyping . But I was wrong.

The true story is, he attended a conference about a specific rare disease. I forget its name, kinda difficult to remember, but at fast the disease impacts the bone of people who suffered and weakening them. He said that many people does not make it after several years especially kid who suffers since baby. If a baby has this disease, his/her body can not build a bone structure, so (s)he can not walk even to stand up. There is no scaffold to protect the brain.

So, what is so special about this disease for him. It shocking me when he told me that his number two son has this disease. Fortunately, his son can pass the critical phase and he already attend school now. He said that several years ago,his son ,1.5 years old at that time, loose all of his teeth. My friend confused why its happened. He brought his son to the doctor but there is no answer until the last doctor. He was told that his son suffered from very rare disease.

I remembered that some disease appears because of gene. Yes, it s true, he told me. The next surprising story is he (my friend) and his wife is carrier. They know their status after blood testing. So there is a big chance for their children to have this disease and of course their children already become a carrier too. Fyi, he has three children.

After knowing his son illness, he tried to find more information. How to cure or heal this disease. He said that there still no medicine to heal, it still on trial phase. He also join a Association related to this illness. The association gives education to citizen and sharing information with other parents or patient in other country. What a noble action.

I wish his son will be healed soon, or at least he has a great time with his friends so he will not loose his childhood.

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