Sri Lanka Charity

My trip to Sri Lanka and a brief civil war history about it…

Founded in May 1976, the Tamil Tigers waged a violent secessionist campaign that sought to create an independent Tamil state in the north and east of Sri Lanka. This campaign evolved into the Sri Lankan Civil War, which was one of the longest running armed conflicts in Asia until the Tamil Tigers was defeated by the Sri Lankan Military in May 2009.

The Tigers, who during the height of their power possessed a well-developed militia, were notorious for recruiting child soldiers, for carrying out civilian massacres, suicide bombings and various other high profile attacks, including the assassinations of several high-ranking Sri Lankan and Indian politicians like Sri Lankan President Ranasinghe Premadasa in 1993, and former Indian Prime Minister Rajiv Gandhi in 1991.

They invented the suicide belt and pioneered the use of suicide bombing as a tactic. They also pioneered the use of women in suicide attacks, and used light aircraft in some of their attacks. They are currently proscribed as a terrorist organization by 32 countries, but have extensive support amongst the Tamil diaspora in Europe and North America, and amongst Tamils in India.

After the breakdown of the peace process in 2006, the Sri Lankan military launched a major offensive against the Tigers, bringing the entire country under their control and defeating the Tigers militarily. Victory over the Tigers was declared by Sri Lankan President Mahinda Rajapaksa on May 16, 2009, and the Tigers admitted defeat on May 17, 2009. There has been peace in this country ever since.

The Singapore Club of Sri Lanka presents Hayden featuring Miss Singapore Universe 2009; a charity fund raiser fashion show in aid of the Thalassaemia Centre in Kurunegala.

On an early Thursday morning, I went for a radio interview about my purpose of visit and the charity event.

Jacquie and her assistant Tanja – The most hardworking duo

Jacquie was the one who arranged and organized the whole event! =)

If you like the dress I wore to the radio station and the lovely green top I wore to Elias’s place, do check more of these latest designs from Emileen’s blogshop at Meltcouture!  She has a wide variety of pretty girly designs and colors you can choose from. Her comfortable and elegant dresses made my packing to Sri Lanka so much easier! =)

Later that evening, we had a small gathering at Elias’s to meet all the sponsors from the Singapore Club for the Charity event

The Singapore Club of Sri Lanka presents a solution to the dilema faced by the Thalassaemia Centre of Sri Lanka by organizing and staging a remarkably unique event that will propagate the awareness of Thalassaemia and also successfully raise funds for the project which they did!

We had an early local breakfast on the Friday morning on the way of our 3 hour drive to the Thalassaemia hospital in Kurenegala.

We went in two cars. I was in Sandun’s car along with Ayne and Tanja. =)

Eagerly waiting to meet the patients at the centre and not knowing what to expect!

We have reached the National Thalassaemia Centre in Kurenegala!

What is Thalassaemia?

It is a genetic disorder transmitted directly from parents to children. This is a condition where the conventional levels of hemoglobin are partially or completely suppressed. Hemoglobin is an essential element found in red blood cells that plays a vital function of transporting oxygen through the cells of the body.

Thalassaemia involves the defective and decreased production of hemoglobin and in its mildest form results in anaemia while the severest form could require a lifetime of regular blood transfusion. This genetic disorder not only causes major health risks but poses a psychosocial impact between the patents and their families.

Over 750 patients are currently being treated at the National Thalassaemia Centre. The prevention and rehabilitation of Thalassaemia is essential in the overall management of the disease which is based on -

* Regular blood transfusion

*Infusion of the drug Desferrioxamine to reduce the iron overload of the body

* Rehabilitation of the patient in psychological and social aspects

The National Thalassaemia Centre requires more than 650 pints of blood and SGD$96,000 monthly. The reduction of iron is done with a machine which costs approx SGD$700. It is mandatory therefore to prevent the disease from augmenting in new cases and this can only be achieved by increasing the awareness among the public and by carrying out and efficient screening programme.

These are the few Thalassaemia patients who came to greet us with a nice warm welcome!

My first tour around the hospital to visit the patients

In Sri Lanka, 80 Thalassaemia babies are born every year and about 1600 thalassaemia patients from all over the country.

This was the saddest room to be in.

Watching the mother comfort her child with hopes of her baby’s survival really depresses me. I had to be strong to stay positive with a smile on my face for the sake of the children.

Infant on the brink of death fighting to live

Children’s playground …

This wall was painted by volunteers!

and he was one of the them! What a good samaritan!=)

Thalassaemia is inherited if both parents are thalassemia minor carriers. Their children may have thalassemia minor, they may have completely normal blood, or they may have thalassemia major. Thalassaemia minor carriers do not have to go through the montly blood transfusion but Thalassaemia major carriers have to. In each pregnancy there is a one in four (25%) chance that their child will have normal blood, a two in four (50%) chance that the child will have thalassemia minor or a one in four (25%) chance that the child will have thalassemia major.

Having the opportunity to meet the patients was a humble and amazing experience. The feeling isn’t the same by just knowing the facts but actually seeing it for yourself.  I was very touched and moved by this whole trip that was planned for me. All of my praises and gratitudes goes Jacquie, Hayden, the Singapore Club in Sri lanka, Stigmata, Tanja, Sandun and everyone else who put in so much effort to make this happen.

Here are the two main doctors in charge of the centre. They are indeed very respectable and highly motivating!=)

Here is a cosy and well equiped library for the kids made for their free time and during transfusion.

The room for blood test and screening for new patients.

Here is a respectable young man who is a patient and also a volunteer at the centre!

The lovely children, just like any other normal child except for their dependency on free medical care from the government for blood transfusion every month to fight each and every day to live.

Thalassaemia patient performed a dance during presentation. She is just like any other young girl you would see anywhere! These kids definitely deserve a chance to live a normal life just like any of us, don’t you?!

Thalassaemia is particularly prevalent among Mediterranean people. In Europe, the highest concentrations of the disease are found in Greece and in parts of Italy, in particular, Southern Italy and the lower Po valley. Other Mediterranean people, as well as those in the vicinity of the Mediterranean, also have high rates of Thalassemia, including Middle Easterners and North Africans. Far from the Mediterranean, South Asians are also affected, with the world’s highest concentration of carriers (18% of the population) being in the Maldives.

This slide shows a young boy with Thalassaemia whose deformities first started in his mouth and legs.

Without ongoing treatment, thalassaemia causes severe anaemia and death. There is no cure, but treatment includes regular blood transfusions and nightly injections via a slow infusion pump such as the Desferrioxamine.

Desferrioxamine involves iron chelation.

Each day a Thalassaemia patient has to inject the pump into his body for 10 hours like this boy…

He ties the pump around his body for leaves it for 10 hours a day before he can remove it. Each pump costs approx $700 and can be used for up to 10 years. Most of these children rely on free medical from the government and public donation to survive.

This boy is 16 years old. You can see how the disease stun the growth of this child. Imagine having to do this everyday for the rest of your life and worry all the time for public funding and donation of blood! We should count our blessings.

If these kids don’t get any blood transfusion since birth, they are only given approximately 5 – 10 years to live.

Current treatments allow thalassemia patients to live relatively normal lives, however, a cure remains to be found. The only possible treatment for a Thalassaemia major patient to live a normal life is to have a bone marrow transplant. However, such surgery would be extremely costly, a one in a million probability to find the right match and chances of surviving the operation is uncertain.

Monthly blood transfusion for the children.

Each month without the transfusion, the child will develop deformities which starts with their facial structure like the child in the green top.

How to prevent Thalassaemia?

Awareness programmes aimed at prevention of new thalassaemia births are a must. There are two main ways of achieving this:

1. Carrier Screening
2. Pre-natal detection

People with a thalassemia mutation only in one gene are known as carriers or are said to have thalassemia minor. Thalassemia minor results in no anemia or very slight anemia. People who are carriers do not require blood transfusion or iron therapy, unless proven to be iron deficient.

Children born with thalassemia major usually develop the symptons of severe anemia within the first year of life. Lacking the ability to produce normal adult hemoglobin, children with thalassemia major:

- are chronically fatiqued
- fail to thrive, and
- do not grow normally

Prolonged anemia will cause bone deformities and eventually will lead to death within the first decade of life. The only treatment to combat severe anemia is regular blood transfusions.

It was a sad afternoon but a real eye opener and a wake up call for me!

A little bit of effort and charity goes a long way….

Prima Deli dinner – The team who worked so hard to put this together for the benefit of the Thalassaemia centre.

A charity event for the great cause and I am glad I was able to contribute to it!

Here are the Stigmata boys, the number 1 heavy metal band in Sri Lanka who put so much effort into the design and layout for the event. They are so down to earth and very talented and i’m very honoured to have this opportunity to work with them for this charitable cause! Though i’m not a fan of heavy metal music, I gotta say that some of their tracks are pretty interesting! Check out their music at http://www.myspace.com/stigmatasrilanka

Kudos to everyone who did a great job for a good cause! =)

Sweetest model who did the show with me…

Our main aim for the cause?

* Eradication of the deadly disease from Sri Lankan society

* Rehabilitation of the suffering patient and his/her family

We hope to achieve much of this now and more for the future. With the information you now know, you can also do your part bysharing the information with others. Show it to your family, friends, neighbours, coworkers or anyone who has origins from areas where thalassemia is common. Be sure to ask your doctor to test you for thalassemia minor. Increased awareness is the key. There is no option other than prevention.