This video dedicated to all the children in Malaysia inflicted with Lysosomal Storage Diseases such as Pompe, Gaucher, Mucopolysaccharidoses(MPS) and Fabry. We hope all the children can receive early diagnosis and treatment as this can make sure you all live like a normal people, enjoy normal childhood, schooling and be able to contribute to the society one day.
We do not want to see you die early because of misdiagnosis, or your parent forsaken you, taken away your Right for Medication because they were illiterated and keep you forever in the corner of your house. And worst send you to charity home without any hope.
We do want to see your entire life was sacrificed, leaving this world without a name, just because somebody think this is something to do with bad carma from your pass life.
Yes, today, we are here to make a different, to call upon the conscience of every Malaysian that you all are the weakest one, most needed our help, and we will be with you until your right has been resurrected.
We want every LSD patients to get immediate treatment without delay, we don't want Muiz (http://www.youtube.com/watch?v=9_ZdGoEZcLI&feature=feedu )until today still not getting treatment yet, his condition is worsening, I cried last Sunday when looking at him as his forehead has expanding, that indicate the heparan sulphate has accumulated due to the disease proliferation. This feeling was exactly 5 yrs ago while waiting for Myozyme for my 2 daughters.
We also urge the setup for Genetic and Metabolic Clinic at General Hospital for the physician to treat all the rare disorder patients in a more conducive environment. We have almost 8 patients with MPS IV now awaiting for Clinical Trial, their parents has to leave this countries in order to accompany their children to oversea countries which provide the facilities which can support to the ERT trials. BUT they can be treated here in Malaysia if WE have our own clinic, trained nurses and equipments to facilitate , recording all the data for clinical studies.
Please allow patients to participate in the Trials, allow the parents to making a choices. Empower them with knowledge, tell them what is this disease all about, pls tell them even though they are lliterated. Our country is full of natural resources and definately will be able to assist this minority group of patients.
Today MLDA would share this video clip with all Malaysian. Together we can make the different!
From President of MLDA
Ir. YS Lee
这个录影呈现给在马来西亚的所有患上溶酶体贮积病（LSD），如庞贝氏(Pompe)，高雪(Gaucher)，黏多糖症（MPS, 法布里(Farby) 病的孩子。我们希望所有的孩子都可以得到早期诊断和治疗，因为这可以确保大家都可以过着正常的人的生活，让你们可以享受正常的童年，就学，而且有一天能够对社会作出贡献。
我们不希望看到你们这么早就离开， 由于误诊，或者你的父母抛弃了你，夺走您的就医权利，或者因为他们的无知，将你们永远留在你的房子的某个角落。最糟糕的是送你去慈善家里，完全没有任何的希望。
我们不希望看到你的整个生活被牺牲，离开这个世界上没有留下一个名字，或者 有人认为这是你们前世的业障，难道真的是一条绝路吗？
是的，今天，我们在这里做出不同的呼吁，呼吁每个马来西亚人的良心，让他们知道你们都是最弱的一个，最需要我们的帮助，我们将与您一路陪伴，直到您的所有权利得到人道的尊重。
我们希望每一个LSD的病人得到及时的治疗，毫不拖延地，我们不希望Muiz（http://www.youtube.com/watch?v=9_ZdGoEZcLI&feature=feedu）直到今天仍然没有得到治疗，他的病情恶化，上个星期日，我哭了，看着他时，他的额头不断扩大，表明肝素硫酸已累计，这是疾病扩散的症状。这种感觉是正好在5岁前，而我的2个女儿在等待Myozyme的就医，度日如年。
我们敦促遗传和代谢诊所在中央医院必须及时成立，医生对待所有的罕见疾病患者，在一个更有利的的环境设置下就医。我们有近8位MPS(IV) 病患，现在正等待临床试验的病人，但是他们的父母必须离开这个国家，只为了陪孩子参与试药。如果大马，有我们自己的诊所，受过训练的护士和设备， 那么他们就不需要抛开工作,家人及朋友，这是另人很锥心的事。
让病人参与试药，让家长作出选择。给他们知识，知识就是权力，告诉他们这是什么病，告诉他们，即使他们受教育不多。大马是个自然资源丰富的国土，一定能协助这些少数病患者。
今天MLDA将与所有马来西亚人分享这个视频剪辑。我们站在一起，黏在一起，今天的爱，是明天的希望，我们可以改变他们的命运！
MLDA主席
Ir.李意盛
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Lysosomal Storage Disordersby pesumcinema111 views
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