【透視罕見病】#全港唯一
一對龍鳳胎呱呱落地
哥哥俊杰卻患上 #全港唯一罕病 #SSADH
#琥珀酸半醛脱氫酶缺乏症
8歲的 #俊杰 成了 #抽搐無間的「植物」孩
腦部缺乏某種酵素...
身體軟癱、呼吸急促、無法言語...
每小時窒息多達80次以上
每晚如「浸親」般徘徊死亡邊緣


媽媽心頭淌血
「每過一日都係賺返嚟生命喺度倒數緊...」
睡覺也要捉緊哥哥小手
惟恐他抽搐不止至全身僵硬、缺氧...
為了兒子父母耗盡逾四百萬積蓄
透支信用卡度日


妹妹晞彤成了家中小天使治癒人心
「媽媽你唔使擔心你休息吓我睇住哥哥。」
更不時寫信鼓勵哥哥

❣親愛的哥哥❣
我知道你很痛苦
但是你一定要堅持下去
一定不可以離開我們。
如果你離開我的身邊
我會很傷心、很傷心的
我以後好好照顧你

立即分享、留言、捐款...支持俊杰一家
去片https://bit.ly/3mNVtk9


香港首個以病童為主的慈善眾籌平台
Lifewire《護聯網》— 救救孩子你做得到
了解Lifewirehttp://www.lifewire.hk
即時網上捐款https://bit.ly/2Ng4vHj
加入義工團隊https://bit.ly/2MQECyr

#Lifewire #護聯網 #慈善 #眾籌 #慈善基金
#罕見病 #病童 #助病童 #何俊杰
#Lifewire罕見病個案
#全港唯一 #大手握小手
#生死邊緣 #無間斷 #抽搐
#睡眠障礙 #共濟失調 #癲癇
#Lifewire #Charity #Crowdfunding #NGO
#RareDisease #Seizure #SleepApnea #Donate

At Lifewire, YOU can change a child’s life.
Founded in 2014 by Chun Wo Development Holdings Limited, Lifewire is the very first crowdfunding platform for children with rare diseases in Hong Kong. We bring together patients, charities, donors, and medical experts into a tightlyknit community to provide a channel for those in need to receive help.

By documenting each patient’s story through text and video, we strive to share their narrative with the public to:
Raise funds to provide urgent medical care for children with rare diseases and to support patients’ longterm medical needs
Promote an inclusive society by increasing public awareness of rare diseases through community education

More Cases: https://www.lifewire.hk/tc/CausesAnd...
Monthly Donation: https://lifewirehk.typeform.com/to/dq...
Volunteer with us: https://www.lifewire.hk/tc/supportli...