Fun and feast for special children

Courtesy: dawn.com

Around 500 special children of different educational and rehabilitation centres being run by non-governmental and charitable organisations enjoyed exciting games, competitions and other recreational activities at a carnival held on Monday.

Inside a huge tent pitched in a lawn along Sharea Faisal especially for the young visitors, no one was found too shy or too timid to interact with one another.

Potato race, bubble catch, pottery, freeze dance, dart shooting, jumping castle, illusion show and pin the donkey made the colourful event even more thrilling for the young participants.

It was one of the rare occasions where street children also had an opportunity to attend the “Ramazan kids carnival”.
“The purpose was to give special children, orphans, street children and thalassaemia patients a chance to have fun and also demonstrate their talent,” said Farhan Ahmad, an official of the HSBC that had organised the event.

Children accompanied by their teachers and representatives of their academic and rehabilitation centres were encouraged to participate in games and competitions. While the enthusiasts won prizes which also included toys, all children attending the event were presented with Eid gifts. It was their involvement in the exciting activities that made the carnival a remarkable event.

A couple of celebrities also joined the special children at the evening.

Zaid Rao, a young thalassaemia patient, told Dawn that he found the evening interesting. “We all have good time here,” he said, adding that the special children also had an opportunity to expose their hidden talents and feel, amidst clapping and appreciation, a change they too deserved.

Farhana Khalid, a teacher accompanying the deaf and dumb students of the Family Educational Services Foundation, appreciated the fact that the special children had been offered a recreational facility despite all odds in society.

Rana Asif Habib of the Initiator Human Development Foundation said that the problem of street children was a serious challenge for the civil society. He highlighted the need for civil society and the government to join hands to ensure provision of rights to children.

The special children showed their keen interest in pottery, face painting and bubble catch booths where organisers were present to guide and support them.

Later, Iftar was also served.

The children had come from different educational and rehabilitation centres, including the Family Educational Services Foundation, Karachi Vocational Training Centre, SOS Children’s Villages of Karachi, Concern for Children, Children Health & Education Foundation, HOPE Home Schools, Kashif Iqbal Thalassemia Care Centre and the Initiator Human Development Foundation.

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‘1.5m Thalassemics unaware of their condition’

Courtesy by: thenews.com.pk

Thalassemia is a painful disease and currently there are 1.5 million patients suffering from it who are completely unaware about it, said Mohammed Iqbal, president of the Iqbal Thalassemia Care Centre (KITCC) Trust on Saturday.

Addressing the inaugural ceremony of the KITCC Trust that saw a number of political figures coming forth with their support for the organisation, Iqbal further explained the illness to the audience. “There are two types of Thalassemia, minor and major. The minor one is a blood irregularity and doesn’t require any medicine but if two people having Thalassemia minor get married then their children may be born with Thalassemia major which is not curable and is a life long process of pain and misery for the family,” he explained.

“The disease spreads because of intermarriages and most of the victims are Baloch, Pathan, Memon and other such communities where intermarriages are common. As a result, the disease is carried from generation to generation,” he added.

S M Muneer, Patron-in-Chief of the KITCC Trust lamented how the government was always there when passing a bill but when it came to actually providing financial security to welfare organizations, it did not seem to have time. “We know that there are other more important issues for the government to deal with but health care is equally important, and needs concerted effort as it is teamwork and can’t be done in isolation,” he said.

Sindh Minister for Health Sindh, Dr Sagheer Ahmed, reiterated the same and added, “It’s high time we stop supporting a cause verbally and instead show that we actually aim to do something about it. We need the state to come forward as it’s a long-term process.” He also stressed the need to bring forth laws in which married couples would be asked to go for blood tests in order to avert the risk of Thalassemia.

In the end, Speaker Sindh Assembly and Acting Governor of Sindh, Nisar Ahmed Khuhro, said that the Sindh Assembly had passed a resolution in October 2009 according to which it would be mandatory for the youth to go through tests before marriage so that the disease could be investigated upon. Senator Abdul Haseeb Khan also spoke.

‘15,000 bottles of blood required daily for transfusion’

Courtesy by: thenews.com.pk

Friday, May 08, 2009
By Farooq Baloch

Karachi

About 15,000 bottles of blood are required monthly in Karachi alone to cater the blood requirement of Thalassaemia but existing blood banks cannot arrange for the supply of demanded quantum of blood, said Kashif Iqbal Thalassaemia Care Centre (KITCC), Chairman Muhammad Iqbal while talking to The News on Thursday.

Iqbal said that families of Thalassaemia Major patients are presently in agony due to shortage of blood transfusion facilities in the city. “This scenario has multiplied the hardships of Thalassaemia families. KITCC now intends to provide better transfusion services from its own blood bank to thalassaemic families,” he concluded.

“To keep these children alive they have to be given new blood every 15 to 20 days throughout their lives,” he said. “Unfortunately, due to the lack of awareness among people and lack of cooperation on part of the government and its health ministry, T-major patients die at an average of 15 years or so,” he lamented.

“We can’t do much about T-major patients but by spreading awareness and taking precautionary measures we can make sure that two T-minor patients don’t wed thus T-major cases would be reduced,” he continued.

KITCC is all set to launch it own blood bank to provide free of charge blood transfusions for needy Thalassaemia patients. All arrangements, including purchase of necessary machines and equipment, have been made to initiate the functioning of the blood bank while we have also applied for a license, said Iqbal.

Iqbal said that KITCC Blood Bank, which has been made exclusively for thalassaemic patients, is the only blood bank of its kind in Pakistan, as according to him there is no ward for such patients in whole country. Another bank exists in Islamabad but its services are substandard. “Any one can register their children with our blood bank for free treatment,” he said, adding: “20 to 25 children can be facilitated everyday in the blood bank.”

Thalassaemia is the most common genetically transmitted disorder of haemoglobin encompassing 8-10 million carrier population (Thalassaemia Minor) in the country. Presently 0.2 million are Thalassaemia major patients and 6-7 thousand babies are born every year with Thalassaemia Major.

“Simply the provision of treatment facilities is not the answer but prevention measures involving extensive awareness campaign are required to wipe out Thalassaemia,” Iqbal asserted.

Criticising the government, he said that Marvi Memon had once argued in the National Assembly that pre-marriage couple testing for Thalassemia should be made compulsory as is the tradition in other countries but Federal Health Minister Ijaz Jakharani opposed it.