關於 inherited disease ，我們在網路上蒐集到這些相關的討論、資訊與評價

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Circle DNA
#CircleDNAChangeMaker
#CircleDNAStory

Today when I was taking train home from work, I happen to chance on this family.
A father and his daughter, and her grandfather.
They looked lovely together, they chatted and smile throughout their conversations with the little girl. She was probably 3 or 4 years old? She was a sweet and lively girl, she was cheerful and friendly too. I can't take my eyes away from this beautiful child. Her eyes shines.

I was focusing on her eyes as if they were telling me.. "there's nothing in life that we should feel sorry about, because when we were given this life, it is already the start of a new happiness.. Don't lose your smile, just keep going.."

I realized my eyes started to tear up. I tried to look back to my phone and pretend as much as I can so no one notice I was crying... And when I had a better control of my emotions, I looked back to this beautiful child, I looked at her from top to bottom, her surroundings and sadly, her condition...

She had Harlequin Ichthyosis (a scaly skin condition), its a very rare type of severe, inherited, genetic skin disorder and is characterised by thick white plates of skin with deep cracks, which are vulnerable to bacteria and other contaminants, putting the person at the risk of fatal infections. The name of the disorder itself, “ichthyosis” – which comes from the Greek word for “fish” – refers to the “scales” that cover sufferers’ bodies.

I read about the skin disorder before so I can completely manage my expectation from what I saw.

My heart breaks so much. I just can't believe it.. She is still very young, so young and so new to this world, and she is probably her parent's first child, her grandfather's first granddaughter... But she was "given" this disease to deal with from the beginning of her life. I'm heartbroken.

She still interact and behaves like a normal kid, bubbly and happy. I hope her future gets better with no judgement and discrimination from the public.

God, please bless this beautiful child and family with more love and strength. Fighting a temporary battle is manageable, but fighting a permanent battle can be mentally challenging and mentally drained. God, please bless this beautiful child with the right attitude to live this life and may she be surrounded by lovely people in her life, always. And may God continue to bless her family 🙏❤️

What I'd learned from them:
1. Be happy even when life don't give you a valid reason to be happy
2. Life can throw you lemons, behave wisely, make yourself a good lemonade and just drink it (just do it!)
3. Be strong and positive, that's all you need to keep you moving and going
4. Don't complain over small matters, there are many people out there who are more unfortunate than you and they're not even complaining
5. Be grateful, be compassionate, be thankful, be loving, be kind, always

Photo reference: Mui Thomas

#harlequinichthyosis #spreadlovecreatehope #createawareness

GE14 occupies so much of our attention these days, let's not forget about people that requires our attention as well.

The Giving Bank Organisation is raising fund for the #ichthyosis patients. Ichthyosis is an inherited disease categorized by dry or scally and thickened skin, and their basic medication would normally cost them no less than RM400 per month!

Currently they are facing a hard time financing their maintenance medication and we need your help to reach their goal of RM1,800 before 22 May 2018! We have already raised RM522 and now, RM1,278 to go!

Please help them by going to this link: https://thegivingbank.com/campaigns/campaign/NSD2018! You just have to donate RM10 today to help them out! If there are 128 people donate RM10 today, we will reach our goal!

#thegivingbank