Welcome to Cheng Cheng's Homepage


About Myself 

Hello everybody. My name is Too Wei Cheng, a girl, (  I look like a boy in the photo ) born on the 22 APR 1999 in a wonderful country, Malaysia. I'm a high-spirited, imaginative and mischievous little girl just like any other kids of my age but unfortunately, I have a blood disorder condition known as Beta-Thalassemia Major which makes me an anemic and require blood transfusion in order to live.    

Click here to see the rest of my photos.

 

       Listen to me trying to sing Ten Little Indian Boys

 

Beta-Thalassemia Major

Thalassemia is an inherited disease of the blood. It reduces the amount of hemoglobin the body can make, so it can cause anemia. This is a genetic disorder that was passed to me by my parents who are  carriers of this blood disorder. Normal people have two normal genes that control how hemoglobin is made in each red blood cell but both my parents have one normal gene for hemoglobin and an altered one (defective). However, they are completely healthy  because  one normal gene is working well. When I was conceived, unluckily, I'd inherited both of my parents' defective genes.  However, I was completely healthy when I was born because during this time the blood consists mainly of fetal hemoglobin, HbF (2 alpha-globin & 2 gamma-globin). Problem starts when the body biological function switches fetal hemoglobin to adult hemoglobin, HbA ( which consists of 2 alpha-globin & 2 beta-globin.) In beta-thalasemia major, the production of beta-globin is seriously impaired, either reduced or completely missing. ( In my case, it is completely missing). Since my body is unable to produce the beta-globin, adult hemoglobin, HbA is not in existence. During presentation ( in the same month I turned 2 years old ), I was hospitalized for 8 days and had to undergo a series of blood tests. In a test called the Hb Electrophoresis, the result showed that I was a beta-thalassemia major - HbF, 97.7% and HbA2, 2.3%. My Hb level was at 5.4g/dl and was given a blood transfusion. Normal Hb level for children at my age should be about 11g/dl - 14g/dl. You can see how severe the anemia was.

 

Thalassemia Treatment

I'll need a regular blood transfusion to maintain my Hb level at a normal range and this will be for a lifetime. There is no medicine for a cure from thalassemia, at least for now, hopefully gene therapy will provide the cure. Bone marrow transplant is a cure...but this is not possible for me because I'm the only child of my parents and the most suitable bone marrow donors are from a healthy brother or  sister of mine. I think my parents will dare not to have another baby because both of them are carriers and they are the couple "at risk". They have 25% of having a completely healthy baby, 50% of having a baby with trait (carrier) and 25% of having a thalassemia major baby in each pregnancy. As you can see, I was the 25% of  having a thalassemia major baby from my mother first pregnancy. Not a sure win bet! On average, one in four of a thalassemic's brothers or sisters is a suitable donor.  With regular blood transfusion, iron-overload will be a major problem because of extra iron accumulation in my body from the transfused red blood cells.  I'll need iron-chelation drug, Desferal to remove this excess iron from my body. This is a life-saving medication from iron-overload toxicity. To summarize, for a thalassemic to live, he/she will need regular blood transfusion and Desferal to control the iron content stored in the body. These two items go together in the treatment of thalassemia. But Desferal is very expensive. This will put a heavy financial burden on my parents. My daddy is working hard on it on how to ensure I'll have enough Desferal. This includes selling our newly purchased house as paying for the house installments will no longer be affordable as the cost of Desferal per month can be from RM500 to over RM1000 as I grow older and  my blood requirement increases and so does the Desferal dosage.

 

Prevention

Prevention of thalassemia is through education and awareness. All new couples  who are going to start a family should go for a  blood test to know their  thalassemia status. You can't tell from  physical appearances whether a person is  a carrier or not because he/she is completely normal and healthy. Just a blood test ( Hb Electrophoresis )  can save you from all the troubles associated with  having a thalassemic child. I'm a thalassemic and I know how it feels and the amount of troubles my parents have to go through to bring me up.

 

Contact

I can be reached at:-

                                        mail to : jctoo@streamyx.com

 My daddy will answer any query about me on my behalf. He is the one who has created this site for me and he'll maintain it until I'm old enough to do it myself. As of today, I'm 2 years and 3 months old. 

 

Date: 15 JULY 2001


Click below to view my recent updates.

1. Photos from Genting Highland trip. Taken on 7 OCT 2001.

2. My medical record

3. Thank you Betamek Electronics


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