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Hope of Life... ''Ammar''
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- Опубликовано: 26 фев 2014
- Latest update April 2015: Ammar has been granted Aldurazyme by fully sponsorship from Bank Simpanan Nasional Since Aug of 2014, his condition has improved tremendously.
We thank for all the youtube user support as this video has save his life.
Name: AMMAR
Age: 4
MPS Type I (Hurler Syndrome)
About:
Ammar is an intelligent and active boy. He likes to play with his friends and his only sister. He likes to help his mother with her work.
Symptoms & Physical:
At the age of one month old, the coarsening of his facial features became apparent. Ammar sometimes experiences bone and joint stiffness that could result in paralysis one day. This disorder has already affected his hearing and internal organs especially his heart.
Diagnosis & Treatment:
After a series of blood tests, Ammar was confirmed to be suffering from MPS type I or Hurler syndrome. At the moment, Ammar receives constant medical attention and remedial care for his symptoms through regular visits and checkups at Hospital Kuala Lumpur (HKL). Even though he has recurring ear infections, the doctor advised that ear surgeries for his hearing problem has to be put on hold until he receives the Enzyme Replacement Therapy. His parents really hope that he will be given the chance for the Enzyme Replacement Therapy (ERT) before he suffers from damage to the brain and further deterioration of his health.
If you would like to do a bank in cash or cheque donation, please make it to the following account
Public Bank 3169692035 to Pertubuhan Penyakit Lisosomal Malaysia
Then, please email your particulars to donation@mymlda.com. Please include your:
Name
IC Number
Mailing Address
Contact Number
Email Address
Donation via which bank
Date & Time
Donation Amount
Transaction Reference Number
If possible, please also send us a scanned copy of the transaction slip.
Please visit our webpage www.mymlda.com for more information.
May Allah help you and you see Ammar geowing up infront of your eyes. I can feel everything bcz I have the same case in my daughter "Reem" she is 1 year now and Doctors just defined that she is Mucopolysiccharidosis. I see Reem's face on Ammar's face. hope our children live long and we see her happy. may Allah help you sister
Today 5.8.2014 Ammar had received his first enzyme replacement therapy at Hospital Kuala Lumpur. Thanks to Bank Simpanan National that help to fund for the treatment, we hope other GLC companies can come forward to adopt our children.
To know more about us, pls log on to facebook.com/pages/Malaysia-Lysosomal-Diseases-Association/101898083240617?ref=hl