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


  Find us on:    


Sign Up for E-Newsletter  

 
MLDA
   Home » Patients » Memorials » 
  Patients
  Patients Stories
  Patient Communities
  Clinical Trials
  Memorials
 
 
 

Dharmash (2000-2016)

31 January 2018

 A 16 years old boy live in Mentakab, Pahang. Darmash was 3 when his parents realized that their child has hearing difficulties. His body begun to experince stunted growth at the age of 4. Besides that, Darmash has distinctive coarse (puffy) facial features (large rounded cheeks with broad nose and an enlarged tongue). Although he seems to be an active person, Darmash is vulnerable to common viruses like cough and cold. A bit of flu or cough can turn into something deadly if not properly taken care of. MPS II had als affected his major joints and his bones too. At 7 years old, it was confirmed that Darmash has MPS type II (Hunter Syndrome). Darmash has so far undergo hernia surgery in 2006. In addition, he also has hearing problems and regularly goes to HKL for his follow-up and treatment for the eyes, ears and heart.

On 16 June 2016, everything, the family’s hope, dream, and life, was gone in a blink of an eye. Everything was gone. Why? Because of Darmash's death. Everything happened at lightning speed. One second, he was walking happily with us towards their car, after ERT and the next second he was lying on the floor unconscious. Like mad people, the family carried him and runs towards the hospital only to know, he had left the three alone; he had left all of his dreams and hopes.

 

What suddenly happened to him? Want to know the reason? The reason is LSD is life-threatening. If LSD patients are not treated early, they will end up having a variety of complex disorders that involve multiple organs, which will lead to death. Darmash got his treatment at the age 15 which was quiet late, as LSD patients average life span generally does not exceed 20 years. If they are treat in early age, they are bright chances for them to live longer. Due to ultra-high medical cost, we a middle class family, are unable to afford the ERT treatment for him in his early days. If ERT commenced when he was diagnosed back then, he may have a better chance of living a longer a life.  But it’s too late now. He is gone. But not his dreams and hopes.



  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