MLDA
Ways to Support   |   Be a Friend   |   Be a Member   |   Feedback & Enquiry   |   Contact Us


  Find us on:    


Sign Up for E-Newsletter  

 
MLDA
   Home » Updates & Publications » Video Gallery » 
  Updates & Publications
  E-Newsletters
  Photo Gallery
  Parent Blogs
  Video Gallery
 
 
 

Hope of Life...Darmash

21 April 2014

It is a sad to know that your child is inflicted with any form of ill condition. In addition, this is a life threatening condition! Darmash who is 14 this year was diagnosed with MPS II (Hunter Syndrome) and has been waiting patiently for his ERT treatment- which is there but not within reach, like the saying so near yet so far! This is due to the fact that YES! The medication to curb the deterioration of this condition is in existence but at a pricy cost ( which no ordinary parents could afford independently! Hence, the help of the Government would be needed!) We have visited Darmash at his family home in Mentakab, Pahang recently in Dec 2013 and surprisingly he responded well to us and his mental has not deteriorated much yet. He could express his dreams and aspirations and it is really heart wrenching to see a teen who had been suffering throughout his life due to his heath issue not be given a chance of survival, a chance to fulfil his dreams and aspirations by refraining him from the medical treatments that could help curb his condition from getting worse! The only party who could help Darmash and 20 more similar patients in the waiting list to get treatment is the Government- we plead you to help us financially to get these special children to get treatment! We have already lost a fighter few days back, Hariharan due to lack of treatment. Let’s not make history repeat itself!

Please Click Here to see his video.



Image Gallery



  printer Printer-friendly version   printer Send link to a friend

 
 
| | | |
© Copyright Malaysia Lysosomal Diseases Association (Pertubuhan Penyakit Lisosomal Malaysia) 2011    All rights reserved.
Registration No: 2621-NSE
1520, TAMAN BUKIT KAYA, 70200 SEREMBAN, NEGERI SEMBILAN, MALAYSIA.
Email:       Telephone: 019-6899620