With the intent of raising public awareness on rare disorders and educating the public to be emphathetic towards such patients and their families. I felt this is indeed a great initiative as there is a need to increase public awareness on it, as well as funding to fund RDSS is rare. Hence, it is very much needed. Especially for the middle and low income families, the high cost for treatments, equipments and medication can be very straining on the pocket on a long term basis.
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| Host for the day: Cassandra Rudge |
I can totally relate to this as I knew how much funds were needed back for my younger brother's treatments. Something which you may not know about me as I have never mentioned about it on my blog. I have a dearest, younger brother who was a down syndrome child since birth. During the first 7 years of his life, hospital was like his second home. He was always hit with high fever which inturn led to fits and was on high dosage of medication daily.
He was immobile throughout his growing up years, could not crawl like any other babies, could not sit up, self-feed himself nor walk even when he was at the age of 7. I remembered my parents ferrying him to Rainbow Special School back then for him to attend therapies to strengthen his muscles, hoping to see some improvements. Our family loved him dearly despite the condition he was having, giving all our love and support to him. Unfortunately, he departed and left us at the young age of 7.
As I watched the video clip and the interviews, my heart went out to the families, I was trying to hold back my tears. The parents shared the kind of verbal insults and criticisms hurled at them, ignorant people chose to believe that the disease is rare so it is contagious or even dangerous, people chose to avoid them and outcasted them.
Imagine how hurting the words can be? Let's not just mention about people with Rare Disorders. I have mummy friends sharing with me how their kids got bullied in school just because their kids are slightly plump. There were kids who went around instigatiing the rest not to befriend the plump kids, otherwise they would unfriend the rest. To me, this is outright bullying and it is definately not healthy to the self esteem. If I were to narrow it down, this voiced down to how the kids were being brought up. The responsibility of educating the kids still fall back very much on the parents, this goes the same for how adults are being educated about Rare Disorder and how do they teach their kids to show more empathy towards people with this condition.
I spoke to the moms of the patients and I gave a pat on their back for their strength and resilence. The journey to care for and raise their kids who are diagnosed with rare disorders is really challenging and physically demanding but the families chose to be strong and continue to walk on together. Through the conversation, I got to know more about their difficulties but I can feel their strong and positive mentality and it was really wonderful to have RDSS formed to give these parents the support they needed.
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| Mummy Jasmine with Sarah in her arms |
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| Photo by: Mylilbookworm |
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| Celebrities and Influencers onboard "KnowMe 2018" campaign |
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With two big hearted mums by my side.
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Not only the celebrities and influencers are playing their part, it was heartening to see various companies participating as cash and food sponsors too. Win & Win Printers Ptd Ltd, Gu Ma Jia Private Kitchen as well as Butter Craft Bakery.
To raise funds through "KnowMe 2018" campaign, iROO has launched an exclusive limited edition charity tee shirt "LoveWings" that comes in two colours, black and white. The tee shirt is retailing at $68.80 each at all iROO retail stores from 28 February 2018 - 15 April 2018.
If you agree with me, the design of this charity tee, is simple yet beautiful. If you also do notice that my tops and dresses are usually plain, this is definately one beautiful piece which I will definately wear. Let us help make a difference, do support "KnowMe 2018", iROO hopes to raise up to $10,000 through this campaign.
#KnowMe 2018 #iROORDSS #RDSS #iROOofficial
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