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#為迷失的孩子找到新希望
今天例行到安置機構訪視弱勢小孩
小妹妹是一個即將滿一歲的毒寶寶，最近剛因為呼吸道感染併發敗血症，才剛從長庚醫院轉回來安置機構。
轉回來之後，小妹妹還是呼吸有喘，於是安置機構給小妹妹用上新買O2 hood。
哇！我看這O2 hood真的蠻不錯的。
側邊有門耶！（圖1、2）
真的科技始終來自於人性！
安置機構剛買這一個新的氧氣罩，剛剛好小妹妹可以使用，可以改善她的呼吸狀況，真的是太感動😹！
小妹妹的故事其實是⋯⋯
小妹妹的媽媽是一個吸毒的女性，嗑藥後被「撿屍」意外懷孕，懷孕期間從來沒有做過產檢，小妹妹從胚胎形成那一天，就慘遭「毒害」，所以她一出生🐣，不但是毒寶寶，還發現有小丑魚鱗癬（Harlequin ichthyosis）
這樣的小孩是先天性魚鱗癬中最嚴重的一種，發生率約1/300000，死亡率頗高。併發性感染為主要死亡原因，但近期因良好的照顧，嬰兒期的存活率已提升。
小妹妹還好在我們的社會局、安置機構及長庚兒科急重症醫師群的一起努力協助下，讓她能夠一次又一次的度過難關！
台灣處處充滿著愛，為迷失的孩子找到新希望！
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
Abandoned at birth. Bullied at school. And regularly abused as an adult.
And yet, Mui Thomas is determined to help others and *not* let a rare skin condition hold her back.
Meet this truly inspiring young woman.
面白いと思ったら高評価してね(^-^)b
パートⅣ/Part 4
https://youtu.be/AEaIhi3Vddg
U.N.C.O
https://youtu.be/3uOwNEzIu4g
PDRさんのリンク/Mah Links
メインチャンネル/Main Channel
https://www.youtube.com/user/PDRKabushikigaisha
バカップル/Bacouple Channel
http://www.youtube.com/user/BaCouple
My English channel
http://www.youtube.com/justduncannohiro
チッター
http://twitter.com/#!/PDRnotPDS
ブログ/Blog
http://lattethehisser.blogspot.jp/
フェイスブック/Facebook
https://www.facebook.com/pages/PDRsanJustduncannohirosan/127747674017304
アメブロ
http://profile.ameba.jp/mygirlhiro/
tumblr
http://mygirlhiro.tumblr.com/
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