Talasemia adalah kecacatan genetik yang paling biasa didapati, dengan kira-kira 250 juta orang, 4.5 peratus daripada penduduk dunia adalah pengidap yang menghadapi ancaman maut. Pada 2010, Malaysia merekodkan 4,768 orang pesakit talasemia yang memerlukan pemindahan darah yang kerap. Manakala 5% daripada penduduknya adalah pembawa.



Thalassemia girl hands over excess from donations to fellow patient

Wednesday December 16, 2009

SEREMBAN: Living with thalassemia, a blood disorder that requires regular transfusions, is a very painful struggle. Sim Carmen, who is only 12, knows it too well.

That’s why Carmen, who received donations totalling RM355,442 from The Star readers, had no qualms about handing over the excess funds to fellow thalassemia patient Leong Jia Kit, 11, who is hoping to get a cord blood transplant soon.

Carmen, who will be leaving for Taiwan to undergo the transplant next week, said she was happy to help another person in need.

“I know what it is like to go for transfusions almost every week. Getting the transplant is our only shot at leading normal lives like other children our age.

Instant friends: Carmen holding Jia Kit’s hand during the press conference yesterday. Looking on are their mothers Chin Chui Ling (left) and Wai

“I am looking forward to doing regular things like cycling and swimming after my surgery and I am sure Leong (Jia Kit) wishes for the same things, too,” said Carmen, who instantly bonded with Jia Kit when they met for the first time yesterday.

Carmen, who needed RM270,000 from the total amount raised, will be undergoing surgery and treatment at the Chang Gung Memorial Hospital in Linkou, Taiwan, and is expected to remain there for a few months.

Lobak assemblyman Anthony Loke Siew Fook, who co-ordinated the fund-raising, expressed his gratitude to those who contributed generously after reading about Carmen’s plight in The Star on Nov 27.

“With The Star’s help, we managed to raise enough money for not one but two thalassemia patients in record time. The Sims did not hesitate to pass on the extra funds to Leong (Jia Kit) as they understood the predicament his family is in.

“We are not appealing for more funds and any extra that we receive after today will be donated to a thalassemia association or other needy patients,” he said.

Jia Kit’s mother Wai Chooi Fong, 48, said her son was on the transplant list of Universiti Malaya Medical Centre and would be able to have surgery done once a matching donor was found.

“Doctors have told us it may take about two years but we are hopeful that a donor will be found soon,” she said.

Wai, who left her job to care for her son when he was diagnosed at the age of three, advised Malaysians who were contemplating marriage to get tested for thalassemia, which is an inherited condition.

“Both my husband and I are carriers but we did not know about it when we got married,” said Wai.


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