Perlis Rare Disorders Society (Singapore)
Rare Disorders Society (Singapore)
I am not related with this society. Only get to hear of them through a TV programme yesterday. Wants to use this platform to raise awareness of our Children in Singapore who are suffering from rare disorders.Rare Disorders Society (Singapore) is a non-profit organisation initiated by parents of children with LSD (Lysosomal Storage Disorder). Established in 2011, it aims to create awareness about various life threatening rare diseases (RD). By providing acknowledgement and investment, RDSS looks to improve lives with timely, accurate diagnosis and intervention. Through building a well-established system, it also aims to encourage society to join parents of RD patients in creating a better future for them.
Watch this programme yesterday - The Joy Truck 2 at Channel 8.
It talked about Yong Xuan. Yong Xuan (2 yrs) is suffered from Osteogenesis imperfecta type 3, which is also known as brittle bone disease. She has experienced numerous bone fractures since birth, and has been frequently been admitted into the hospital. This has resulted in huge hospital bills. In order to take care Yong Xuan, Gary works in a day job while his wife Adeline works in the night shift, hoping to ease the financial burden and cope with Yong Xuans increasing medical cost.
Even though I am a trained military personnel and have more than a decade of experiences in social service, I still wet my eyes after watching what Yong Xuan is going through. My heart goes to her therefore decided to start this thread. I can still clearly remember the way she cried (screamed) when she broke her bone again in the programme.
Wants to share this with all bros here. While we are enjoying our life (living in peace, good health and happiness), we need to learn to appreciate our loved ones and things we have and to be grateful for who we are (healthy and strong) and what we have now (safety and a good roof under our heads).
My philosophy is that it is blessing to be able to give (giving your love, sharing your wealth, giving your time) (so dont be stingy) and the reward of giving is far more greater than receiving from others (we reap a lot of 福气 and Good Karma), and it will be ashamed, very sad and pathetic if someday I can no longer give
==comments==
I watched that show yesterday as well. It was really heart wrenching
>good share bro...thx a lot... Yanam Aquarium。
