from kamarul shahrin's photography blogsite http://www.kamarul-shahrin.com

sam and irfan

felda residence hotsprings - sept 25 2009

3 room villa

felda residence hotsprings - sept 24 2009

irfan and izmir

and my father

felda residence hotsprings sungkai - sept 24 2009

opah mi and atuk with the kids

felda residence hotsprings - sept 24 2009

alia, imir and atuk

sept 24 2009 - felda residence hotspring, sungkai

izmir and alia in the natural hotwater spa.

irfan accompanying izmir during his stay in university hospital kl.

at this time we were still staying in alor star and it is at about this time when we decided to move back to kl for izmir's sake.

a muscle biopsy was done and the sample was sent to australia. the results came back later confirming the disease to be dystrophinopathy, or duchenne muscular dystrophy. the news was devastating to us and until today our lives have been a race against time searching and hoping for a cure.

izmir with family in hukl for muscle biopsy 2005
izmir in front of alor star tower 2005
izmir in front of alor star tower model 2005
izmir and alia in front of house in ara damansara before moving in 2005
izmir at home in alor star 2005

 How could anyone let this happen...?

 I wish I could wind back the clock...and stop this from happening.

Marang Resort and Safaris - recent pictures

 What used to be the management chalet. This is where we spent sleepless nights thinking, brainstorming ideas and planning our tomorrow. I loved spending time here. I would take the earliest flight from KL and have breakfast of nasi dagang just on this side of the Kuala Ibai bridge. it wasn't that early really by the the time I got here from the airport and if I am unfortunate, the nasi dagang could have been sold out.

At one time, I spent about 3 months living in this resort with my family including my maid, working on a project that will make part of this resort even more boutigue.

I have a small porta-cabin office about half a kilometer to the left of this bridge, on the beach right on the edge of a swamp. The cabin is wired to the main office ( we don't have broadband yet in those days ) and every morning I would 'remote access' my Mac in my office in KL. As far as my architects were concerned at that time, it was as if I was upstairs in my room. On quite a number of occassions I was visited by those boys who were selling Macs in Terengganu because they have probably never seen anybody worked virtually before. I mean theoretically and technically, they were experts and i used to sought their advise when things didn't quite go right. But these were tools to me. I determine how I want to work and where I want to work.

Marang Resort and Safaris - recent pictures

 It is so painful to see the resort that I once designed and built, abandoned and faded to dust. This used to be the 'gateway' to the resort where you find at the end of this bridge, an island on which is the reception, main office and the restaurant. All these were carefully inserted instead of imposed upon and the 'man-made' sat comfortably on the edge of nature in an almost seamless transition of space, neither one or the other.

I don't know how anyone could abandon this beautiful resort and left it to become something like this to rot.

Aug 21, 2008, Ao Nang, Krabi

Yati, Alia, Baizura & Izmir

Dec 16, 2008, Peace Laguna, Ao Nang, Krabi. Izmir and Mum

Dec 16, 2008 Peace Laguna, Ao Nang, Krabi

Izmir with his helper Yati

We have a good helper, Yati, who came back 5 years ago from 'retirement' when she heard that Izmir was not well. All in, she has been with us for 15 years. May Allah bless her and her family with His barakah. In no way can we ever find it enough to repay her for the love she has given Izmir and the rest of our children. God bless her.

Dec 16, 2008 Peace Laguna, Ao Nang, Krabi

Izmir - living with duchenne muscular dystrophy

A picture of Izmir in front of the pond where some of the chalets are located. Our next trip may not be driving any more, unless we are planning to do it like Bob and his family. It is getting to tiring for Izmir and the rest of the kids, or probably more so for the mother. We'll find more interesting vacationing to do for Izmir. His next scheduled stemcell transplantation (and the third) will be on Mar 8, 2008. I hope somewhere along the way, something will reverse his condition. I have been keeping tabs of all latest developments in researches towards finding the cure for Duchenne Muscular Dystrophy. It is a devastatingly debilitating genetic disease that renders the muscles necrotic gradually, starting from the waist down and would later move upwards from the waist. So it will affect his pulmonary functions. The stemcell transplantation has somewhat slowed down the necrotic process but is still a long way from reversing it. There is one method done by Prof Zang Xi at the Sun Yut Sen university 5 years ago which may get closer to the solution but the risk is higher because it involves the administration of immuno-suppressive drugs before carrying out the stemcell transplantation. Stemcells here are obtained from fresh cord-blood. The stemcells given will migrate and take-over the marrow functions thereby producing new blood with a different genetic structure thus eliminating the defective genes. But I have to first see the 2 boys who went through the research 5 years ago. If they were successfully treated, I will ask for the procedure and do it on Izmir. the risk is not so much in the stemcells themselves because, contrary to most believes, cord-blood stemcells are without antigens or markers which means that the is no problem of rejection. The risk is in the administration of the immunosuppressive drugs which I believe is 'chemo'. Ideally, I should wait when the risk of the disease outweighs the risk of treatment but that may be too late to reverse the disease. So, I am at a loss here because I cannot find any literature related to this.